FINAL MEETING
The final meeting scheduled for 2012 is tomorrow, December 8th, at Deli-berry. I will be there tomorrow at 3PM. Come join me for a chat over a cup of coffee and I will tell you what's new.
The big news is this is the LAST regular meeting of the Central New Mexico Chapter of the Vasculitis Foundation. No more monthly meetings, and no immediate plans to replace them.
I HAVE BEEN BUSY IN OTHER WAYS
Even though you may not have seen much of me this past year, I also work closely with the Vasculitis Foundation main office. Over the past year I have spearheaded and or collaborated on several projects, including the YouTube Education Channel, the YouTube Awareness Channel, and I have helped develop the newest updates to the Vasculitis Foundation website. That project is still in progress and the first phase will be launched sometime very soon. Watch out for an official announcement from the VF main office.
So many of you have been great to meet, and at various meetings I enjoyed getting to know you a little better, swapping stories, and sharing information. But our chapter is small, and our geography is vast. When compared to some smaller states, we cover a lot more ground. Also, many meetings I would arrive to find the table empty. I know it is hard for you to get to a meeting when you have to measure every ounce of energy you can spend in a day, so it is also out of compassion for that that I agreed to alter the status of our New Mexico chapter.
CHAPTER LEADER BECOMES AREA CONTACT
When the Vasculitis Foundation announced that they were planning to convert smaller "chapters" to "area contacts" I got on board right away. I figure it will not change too much what I am already doing to forward the missions of the Vasculitis Foundation, and I am and will remain, available to any of you should you need additional information.
WHATS NEXT?
Perhaps ironically, this change in status makes me consider doing more when Vasculitis Awareness Month rolls around in the Spring.
I am also working on a deal where I may be able to set up a Skype meeting with some of the big name doctors in Vasculitis Research to a location here in New Mexico. Not quite a symposium, but very much like having them here. If it works out, it would be like attending one symposium session, then you would be able to ask the doctor questions interactively after their talk. There are many details that go into arranging something like this, but New Mexico could be chosen for the pilot project. Please let me know if you would be interested in attending such an event.
Finally, you may see an Email from me inviting you to simply join me at the movies, or go out to dinner. Just to get together with some Vasculitis Friends and share some good times together.
Rest assured, I remain dedicated to supporting the Vasculitis Patients of New Mexico, and in one way or another will continue the missions of the Vasculitis Foundation as we come up with more ways to bring you more and better information about your condition, and perhaps help make your lives a little better in some small ways.
I will also keep this blog and the NMVasculitis.org website. I may even make some time to update the content more often. if you have news or good information to share, please pass it on through me. I have access to pass it to both New Mexico audience and also the the International audience via the main office.
CAN WE TALK?
Yes! If you still want a face to face, remember you can call me anytime, and I will meet you any time that is mutually convenient.
Yours,
Joseph W. Carpenter
Area Contact for the Central New Mexico Area
(presently includes all of New Mexico)
Showing posts with label chapter. Show all posts
Showing posts with label chapter. Show all posts
Friday, December 7, 2012
Saturday, July 14, 2012
July 2012 Chapter Meeting
Neither I, nor Meaghan, will be able to make it to Deli-Berry today.
I have been travelling and to make up for lost time, I have to attend to a client today.
As a consolation prize, I have made arrangements for any chapter members who do show up to get either a free small yogurt, or a drink. Your preference. Just tell them at the counter you are there for the vasculitis meeting and I will settle up with them later.
Thank you for your understanding,
Looking forward, we will be attending the 2012 Symposium in Atlanta. It was a hard push, but we managed to scrape up enough reward miles to go. If you are also going, please let me know so I know to look out for you in Atlanta!
More information and registration here:
http://www.vasculitisfoundation.org/2012atlantasymposium
If you have never been to a symposium, you should consider attending if you can possibly make it.
The medical instruction is excellent, as evidenced by educational videos posted on the Vasculitis Foundation Education Channel on YouTube:
educationvideos.vasculitisfoundation.org
That collection continues to grow, so keep checking back. In fact, I have three new ones from Cleveland Clinic to post now. I had better make some time to get that done!
In addition to the education aspect, there is no substitute for the kind of support you get when you can meet other patients who have your condition. Even though these conditions are very rare, you might meet a dozen or more people who have your symptoms. You can compare notes on treatment and how you have been handling your condition. That feeling you get of "not being alone" is priceless.
Joseph Carpenter
I have been travelling and to make up for lost time, I have to attend to a client today.
As a consolation prize, I have made arrangements for any chapter members who do show up to get either a free small yogurt, or a drink. Your preference. Just tell them at the counter you are there for the vasculitis meeting and I will settle up with them later.
Thank you for your understanding,
Looking forward, we will be attending the 2012 Symposium in Atlanta. It was a hard push, but we managed to scrape up enough reward miles to go. If you are also going, please let me know so I know to look out for you in Atlanta!
More information and registration here:
http://www.vasculitisfoundation.org/2012atlantasymposium
If you have never been to a symposium, you should consider attending if you can possibly make it.
The medical instruction is excellent, as evidenced by educational videos posted on the Vasculitis Foundation Education Channel on YouTube:
educationvideos.vasculitisfoundation.org
That collection continues to grow, so keep checking back. In fact, I have three new ones from Cleveland Clinic to post now. I had better make some time to get that done!
In addition to the education aspect, there is no substitute for the kind of support you get when you can meet other patients who have your condition. Even though these conditions are very rare, you might meet a dozen or more people who have your symptoms. You can compare notes on treatment and how you have been handling your condition. That feeling you get of "not being alone" is priceless.
Joseph Carpenter
Monday, May 7, 2012
Vasculitis Awareness Month!
New Mexico Chapter meeting in Albuquerque on Saturday, May 12.
Come celebrate awareness month at Deli-Berry at 3PM.
(2520 Juan Tabo Blvd NE)
Monday, April 30, 2012
May is Vasculitis Awareness Month
What can you do?
CAN you talk? Then tell everyone you meet about the Vasculitis Foundation. What it is, what they do, and why they should contribute.CAN you walk, roll, hop, or crawl? Get your own Vasculitis Foundation T-Shirt and wear it proudly anytime you are out and about. When people ask you what it is, tell them. If you attend a fun run, wear your Vasculitis Foundation gear instead of their T-Shirt. You can wear that later. When people ask you why, tell them.
CAN you drive? Consider putting a Vasculitis Foundation bumper sticker on your car. Spread awareness while driving around town. Give them to your friends and family as well.
CAN you involve friends and family? When they ask if there is anything they can do, and you usually say no... stop telling them no. Instead tell them to consider making a contribution by becoming a member of the Vasculitis Foundation, then donate, volunteer, and advocate for vasculitis patients every day.
You CAN tell people about vasculitis. The power of one voice is stronger than you may know. Tell people about vasculitis everywhere you go. Get some brochures from your chapter leader and pass them out at your doctors office, and give them to people you meet. You tell one person, then they mention it to others, and awareness spreads like a virus. Together, we can make a difference.
You can get your Vasculitis Foundation Official T-Shirts, bumper stickers, and other gear from the VF Store: https://contribute.vasculitisfoundation.org/store
May Chapter Meeting Coming Up on May 12, 2012
This is Vasculitis Awareness Month. What to talk about it? Why not show your awareness by coming to a chapter meeting!Every second Saturday at 3PM we meet at:
Deli-Berry, 2520 Juan Tabo Blvd NE, Albuquerque, NM. MAP
For more information:
Contact your chapter leader, Joseph Carpenter. He really would like to hear from you anyway. Awareness is better when shared.Joseph Carpenter
Send Joseph Email
or use the Call Me widget in the chapter blog:
http://nmvasculitis.blogspot.com/
Additional Educational links and resources available at:
http://www.nmvasculitis.org
(Moving soon - to be incorporated into http://www.vasculitisfoundation.org/
Monday, February 13, 2012
NM Vasculitis Foundation 2012 Spring Events
I have been helping with a few projects for the Vasculitis Foundation, including the two YouTube Channels for Education and Awareness, advising on the Vasculitis Foundation Video Project, and putting in a lot of time with some behind the scenes changes related to improvements to the VF website that are not public yet.
Consequently, you guys have waited for me to get things started this year. Your wait is over. I am setting up some events in 2012 and you are invited to participate. I hope you will come. I also hope some of you will help me run these events to make them more successful.
At any event, be prepared to tell your story anytime people ask about vasculitis. I can arrange for a news reporter to interview one or more of you if I know for sure a patient will step up to be a voice for us.
Also, remember that I have offered to help film patient and caregivers videos. Contact me if you are interested.
If it goes well, we could get them together again to go to the movies sometime. Nobody understands juvenile vasculitis issues like another kid who has these conditions.
You can suggest a date by contacting me now, or I will pick a date soon and let you know. I will try for a time that works with all the school schedules.
I have a safe place in mind where we could let the kids go downstairs to hang out young person style, and the grownups could stay upstairs and hang out older person style. Maybe make it an annual event during awareness week in May? Just an idea at this point...
If it goes well, we could do it again in the Fall, like late October to mid-November. I think the Thanksgiving season is a special holiday for vasculitis patients.
Again, you can suggest a date, or I will pick one. Probably a Saturday evening in April or May. If you send your blackout dates, I will try to accomodate you as much as possible.
We all know vasculitis patients suffer from fatigue, and so YOU may or may not want to take a One Mile Fun Run/Walk yourself. However....
You can recruit your able bodied friends, family members, coworkers, neighbors, etc. to walk on your behalf. Then we can put together a larger group to walk together carrying a vasculitis banner or maybe some flags? Everyone you get to do this on your behalf could also become a member of the Vasculitis Foundation and get an official 2012 Awareness T-Shirt. Money from those memberships helps to fund vasculitis research, so ask them to join the VF today!
I can get at least twelve people from my family to do this on a Sunday. If I put this out to my basketball teams and their families, then I just might get a few more people on board. How many people can you get to show their support for you?
We would get lots of exposure just being around thousands of other people. Contact me if you want to help me organize this event. We would register as a group, and have to pay the registration fee. The proceeds benefit the Albuquerque BioPark.
I will have more information for you on this within a day or two. If we act soon, there are reduced registration fees through Monday February 20th.
Call your "recruits" today and get them to pledge to walk on your behalf! Send me Email as soon as you know you have some people who can do this so I can add them to our groups list.
The Symposia this time are broken into two one day events. This is a jam packed opportunity to gain knowledge about vasculitis, and rub elbows with other patients who know what it is really like.
I plan to attend the Chicago Symposium, and then stop by the main office in Kansas City to do some pow wowing after the conference. I am not sure yet about Atlanta. The key for me is I either drive or take trains, but not planes. If you want company on the trip, I will be leaving on the Amtrak Southwest Chief probably the Thursday prior to the event in Chicago. I will let you know once I finalize my arrangements.
If anyone would like to participate in these events, or help me plan and organize these events, please contact me, then we can discuss details at a chapter meeting or we can arrange to meet for breakfast or lunch sometime. Call me.
Consequently, you guys have waited for me to get things started this year. Your wait is over. I am setting up some events in 2012 and you are invited to participate. I hope you will come. I also hope some of you will help me run these events to make them more successful.
At any event, be prepared to tell your story anytime people ask about vasculitis. I can arrange for a news reporter to interview one or more of you if I know for sure a patient will step up to be a voice for us.
Vasculitis Foundation Video Project
I say again, patients and caregivers, please consider telling your story on film for the Vasculitis Foundation Video Project. The better videos will appear on the VF Awareness Channel on YouTube. This is a powerful way you can share your story for many good reasons. The bottom line is increased awareness translates into increased funding for research. Your story may also help another patient to know they are not alone. More information, plus links to the Video Project Guidelines, on the YouTube Channel here: http://www.youtube.com/user/vasculitisawareness
The video project has no deadline. However videos submitted prior to the end of February will be considered for a professionally edited wrap up video to be shown at the two symposia this year in Chicago (April 21) and Atlanta (July 21).
If you do not want to be on video, then you can send a photo of yourself along with a typed version of your story for publication on the Patient Stories page of the Vasculitis Foundation website: http://www.vasculitisfoundation.org/patientstories
If you do not want to be on video, then you can send a photo of yourself along with a typed version of your story for publication on the Patient Stories page of the Vasculitis Foundation website: http://www.vasculitisfoundation.org/patientstories
Party for the NM Vasculitis Kids
We have a number of kids in our chapter who range in age from 11 to 19. There are also a couple of kids who have not yet connected with our chapter officially. I would like to connect with those families and get the vasculitis kids and their parents together for some kind of fun party this Spring. Like Putt Putt, or Bowling or Hinkle or something like that sometime after the weather warms up a bit. We would outfit the kids in Vasculitis Foundation T-Shirts so they will be promoting awareness while they have a good time and get to know one another.If it goes well, we could get them together again to go to the movies sometime. Nobody understands juvenile vasculitis issues like another kid who has these conditions.
You can suggest a date by contacting me now, or I will pick a date soon and let you know. I will try for a time that works with all the school schedules.
Pot Luck Dinner Party for all New Mexico Patients and Caregivers
I have a plan to entice you all to come enjoy some good food and good times with each other. We can put together a simple pot luck dinner party for all the patients and caregivers. I have a safe place in mind where we could let the kids go downstairs to hang out young person style, and the grownups could stay upstairs and hang out older person style. Maybe make it an annual event during awareness week in May? Just an idea at this point...
If it goes well, we could do it again in the Fall, like late October to mid-November. I think the Thanksgiving season is a special holiday for vasculitis patients.
Again, you can suggest a date, or I will pick one. Probably a Saturday evening in April or May. If you send your blackout dates, I will try to accomodate you as much as possible.
Run for the Zoo in May with the "Vasculitis Foundation in New Mexico" Group
I would like to get group together for the Run for the Zoo event on Sunday, May 6th, 2012. This is a city wide event with lots of media exposure. We all know vasculitis patients suffer from fatigue, and so YOU may or may not want to take a One Mile Fun Run/Walk yourself. However....
More info here:
We would get lots of exposure just being around thousands of other people. Contact me if you want to help me organize this event. We would register as a group, and have to pay the registration fee. The proceeds benefit the Albuquerque BioPark.
I will have more information for you on this within a day or two. If we act soon, there are reduced registration fees through Monday February 20th.
Call your "recruits" today and get them to pledge to walk on your behalf! Send me Email as soon as you know you have some people who can do this so I can add them to our groups list.
2012 Vasculitis Foundation Symposium in Chicago on Saturday, April 21st
Details here: http://www.vasculitisfoundation.org/2012chicagosymposium
2012 Vasculitis Foundation Symposium in Atlanta on Saturday, July 21st
Details here: http://www.vasculitisfoundation.org/2012atlantasymposium
I plan to attend the Chicago Symposium, and then stop by the main office in Kansas City to do some pow wowing after the conference. I am not sure yet about Atlanta. The key for me is I either drive or take trains, but not planes. If you want company on the trip, I will be leaving on the Amtrak Southwest Chief probably the Thursday prior to the event in Chicago. I will let you know once I finalize my arrangements.
T-Shirt and/or Poster Art for Vasculitis Foundation in New Mexico?
There is no deadline for this, but it would be nice to have something done in time for May. I have long thought it might be fun to design a T-Shirt for our chapter awareness efforts. I wonder if any of you are artists? Would you like to help me design some artwork for a T-Shirt, and/or a poster that we can use in conjunction with other Vasculitis Foundation in New Mexico events? It does not have to be perfect, but it should reflect who we are in relation to our state and our shared connection through vasculitis.If anyone would like to participate in these events, or help me plan and organize these events, please contact me, then we can discuss details at a chapter meeting or we can arrange to meet for breakfast or lunch sometime. Call me.
NM Vasculitis Foundation Chapter Members - YOU ARE INVITED
WHO: All members of the Vasculitis Foundation in New Mexico
WHAT: NM Vasculitis Meetings (2012)
WHERE: Deli-Berry, 2520 Juan Tabo Blvd NE, Albuquerque NM
WHEN: Chapter Meetings in 2012 will be on the second Saturday of every month at 3PM. I plan to get there at 3PM, then will stay as long as we have something to talk about. If nobody else shows up, I will leave at 4PM.
I am also available by appointment. Contact me to set up a good time.
See the chapter calendar for map links, etc.
Saturday, February 11, 2012
Saturday meetings for 2012? What do you say?
I am looking to move chapter meetings to weekends in 2012. My schedule during the week is not allowing me to keep up the Thursday meeting time, and to be honest, not many people showed up regularly. A few came several times, and we had some nice visits. I look forward to seeing you guys and hearing how you are doing.
Would you like to meet on Saturday afternoons? Deli-berry is not open on Sundays, and I prefer to keep that day for myself anyway. What remains is your feedback.
Which is best for you on a Saturday?
Maybe Saturday meetings will also be easier for our younger members as well. In addition to our older patients, there are at least three now under eighteen, and one of you is just nineteen. Perhaps the younger crowd could get to know each other, and invite others who they meet at the docs office, etc.? Besides, what kid would not want a frozen yogurt on a Saturday?
Once I hear back from you, I will use that feedback to make up a schedule for the rest of 2012.
Hopefully more of you can make it to a Saturday meeting. If not, then I am also available by Telephone, Email, Skype, Google Chat, and Magic Mirror. (Just seeing if you were you paying attention.) Seriously though, I will be happy to meet you by appointment if you cannot make a meeting and need to talk about whatever, or just want to have lunch sometime. You are not alone.
I also look forward to hearing your stories, or reading them if you do not do a video and choose to send me a photo with your written story instead. Not a good writer? Worried about the spelling? Do not fear, I will help you with that too if you want help. Let me take notes or record the audio while you tell your story. I can help you get it down on paper, then we can work together to make it a good one before you share it.
Check out the Vasculitis Foundation Video Project to promote awareness. You can learn more about that on the Vasculitis Foundation Awareness YouTube Channel.
Would you like to meet on Saturday afternoons? Deli-berry is not open on Sundays, and I prefer to keep that day for myself anyway. What remains is your feedback.
Which is best for you on a Saturday?
- Early afternoon
- Late afternoon
- Early evening
Maybe Saturday meetings will also be easier for our younger members as well. In addition to our older patients, there are at least three now under eighteen, and one of you is just nineteen. Perhaps the younger crowd could get to know each other, and invite others who they meet at the docs office, etc.? Besides, what kid would not want a frozen yogurt on a Saturday?
Once I hear back from you, I will use that feedback to make up a schedule for the rest of 2012.
- Definitely at Deli-berry.
- Probably once a month on Saturdays.
- Most likely the second Saturday of every month.
- Consider that tentative until I hear back from you.
Hopefully more of you can make it to a Saturday meeting. If not, then I am also available by Telephone, Email, Skype, Google Chat, and Magic Mirror. (Just seeing if you were you paying attention.) Seriously though, I will be happy to meet you by appointment if you cannot make a meeting and need to talk about whatever, or just want to have lunch sometime. You are not alone.
I also look forward to hearing your stories, or reading them if you do not do a video and choose to send me a photo with your written story instead. Not a good writer? Worried about the spelling? Do not fear, I will help you with that too if you want help. Let me take notes or record the audio while you tell your story. I can help you get it down on paper, then we can work together to make it a good one before you share it.
Check out the Vasculitis Foundation Video Project to promote awareness. You can learn more about that on the Vasculitis Foundation Awareness YouTube Channel.
Friday, January 20, 2012
YOU'RE INVITED: Meet me at Owl Cafe on Sunday January 22 at 1PM
WHO: I am meeting some new members. Mary, plus her son John who is age 14 and diagnosed with
GRANULOMATOSIS WITH POLYANGIITIS (aka WEGENER'S) (aka GPA). I would love to see some of you show up as well.
WHEN: Sunday January 22, 2012 at 1300hrs (1PM)
WHERE: Owl Cafe, 800 Eubank Blvd NE, Albuquerque, NM 87123-1200
GRANULOMATOSIS WITH POLYANGIITIS (aka WEGENER'S) (aka GPA). I would love to see some of you show up as well.
WHEN: Sunday January 22, 2012 at 1300hrs (1PM)
WHERE: Owl Cafe, 800 Eubank Blvd NE, Albuquerque, NM 87123-1200
NOTE: Turns out Deli-Berry is Closed on Sundays.
WHAT: This will be an informal meeting to meet John and get him some information to deal with GPA.
It could also be a chance to catch up with some of you and discuss how this chapter, meaning me, can better meet your needs. I have been focused on the national level for a time, but part of that is because you have been so silent. I hope that means you are doing well.
We also have to discuss the capter meeting schedule. I am inclined to go quarterly, but you should have a say so, don't you think? Speak up! If you cant be there Sunday, talk to me by Email so I know what is going on with you.
What awareness activities would you like to help organize, and then participate in? Speak up!
Would you like me to get a doctor to come talk with you? Then I need your input to figure out the best time. I cannot invite a doctor to a meeting where nobody shows up.
Its time for you to step up and take charge of your condition. Some of you have told me you are willing to help, but it seems you are waiting for me to set something up. I cannot set something up until I know who is willing to help me make it happen. Let's get together and figure this out.
Come one come all to the Jellicle Ball, but leave your cats at home just this once.
WHAT: This will be an informal meeting to meet John and get him some information to deal with GPA.
It could also be a chance to catch up with some of you and discuss how this chapter, meaning me, can better meet your needs. I have been focused on the national level for a time, but part of that is because you have been so silent. I hope that means you are doing well.
We also have to discuss the capter meeting schedule. I am inclined to go quarterly, but you should have a say so, don't you think? Speak up! If you cant be there Sunday, talk to me by Email so I know what is going on with you.
What awareness activities would you like to help organize, and then participate in? Speak up!
Would you like me to get a doctor to come talk with you? Then I need your input to figure out the best time. I cannot invite a doctor to a meeting where nobody shows up.
Its time for you to step up and take charge of your condition. Some of you have told me you are willing to help, but it seems you are waiting for me to set something up. I cannot set something up until I know who is willing to help me make it happen. Let's get together and figure this out.
Come one come all to the Jellicle Ball, but leave your cats at home just this once.
Monday, February 14, 2011
February 2011 Vasculitis meeting moved to Friday 2/18
This is a one day shift to accommodate my very busy Thursday. I work all day, then coach games for one team, then coach a practice for another team.
The February meeting of the Vasculitis Foundation in New Mexico will meet on Friday, February 18th at 6:00PM. The location is at our current home away from home at Deli-Berry.
Deli-Berry
2520 Juan Tabo Blvd. NE
Albuquerque, NM
(505) 508-0487
Please update your calendars. If you plan to attend, please let me know. If you plan not to attend, look on this as your opportunity to reply and let me know how you are doing. I have not heard from some of you in a while.
If the Friday meeting day works better for you, let me know and I can consider moving all the meetings to Fridays.
Looking for value added? I will bring DVDs of the 2011 VF Symposium presentations, and we can play selections from that. You have the option to buy them, and I will keep bringing them to meetings if showing them off manages to draw more people to the meetings. You have to show up to see them, or order your own set.
Following up on the last meeting, we have a potential Golf Tournament for Vasculitis in the works, so we might get some new news about that. We should also bring our thinking caps to come up with more awareness ideas. Mine is to commission a poster/TShirt for the NM Chapter that we can wear and/or sell at events.
I will have brochures, lapel pins, and T-Shirts for anyone who attends. Be there or be square.
Take the brochures back to your "other life" and spread the word. At your doctors, at your homes, and even at the grocery store! Tell everyone you know about vasculitis.
See you all on Friday!
The February meeting of the Vasculitis Foundation in New Mexico will meet on Friday, February 18th at 6:00PM. The location is at our current home away from home at Deli-Berry.
Deli-Berry
2520 Juan Tabo Blvd. NE
Albuquerque, NM
(505) 508-0487
Please update your calendars. If you plan to attend, please let me know. If you plan not to attend, look on this as your opportunity to reply and let me know how you are doing. I have not heard from some of you in a while.
If the Friday meeting day works better for you, let me know and I can consider moving all the meetings to Fridays.
Looking for value added? I will bring DVDs of the 2011 VF Symposium presentations, and we can play selections from that. You have the option to buy them, and I will keep bringing them to meetings if showing them off manages to draw more people to the meetings. You have to show up to see them, or order your own set.
Following up on the last meeting, we have a potential Golf Tournament for Vasculitis in the works, so we might get some new news about that. We should also bring our thinking caps to come up with more awareness ideas. Mine is to commission a poster/TShirt for the NM Chapter that we can wear and/or sell at events.
I will have brochures, lapel pins, and T-Shirts for anyone who attends. Be there or be square.
Take the brochures back to your "other life" and spread the word. At your doctors, at your homes, and even at the grocery store! Tell everyone you know about vasculitis.
See you all on Friday!
Wednesday, November 10, 2010
Our next chapter meeting may be online as well as at Deli-Berry
[To view this video, you have to look at this post online in a web browser. Email probably will not play the video. I have been told the microphone for this webcam (Logitech HD Pro Webcam C910) is very sensitive so if this sounds loud to you, feel free to use the volume control in the video player to adjust it according to your preferences. Also, this video is hosted in my SmugMug account, so if you have a video you would like to 'share with the class', please send it to me and I can host it for you privately.]
I am figuring out some new webcam technology, so I may either record some stuff at the meeting, and then later post it, or if I can get WiFi, the webcam, etc, all working, I may broadcast the meeting itself in Skype, Google Voice, or whatever works.
This technology exists, so it would be silly not to try and use it. At least that is how I see it.
This is great news for Bonnie in Taos, if she can tune in, and Jamie, who lives in Las Vegas, plus a few in Albuquerque who find it hard to come to the meetings in person, but might be able to participate remotely.
The next meeting is on Thursday, November 18th at 6PM. The location for Deli-Berry is 2520 Juan Tabo Blvd NE. On Juan Tabo, just north of Menaul Blvd NE, on the right hand side. You will see the Deli-Berry sign, and it is located in between a Sprint store and FedEx Office.
Most likely, I will try to braodcast the meeting in Skype, so to participate you will need a free account, and possibly a headset and/or a webcam. Once you have a Skype account, send me an Email with your Skype ID and I will send you my Skype ID in reply.
Here is some information about headsets and webcams, assuming you do not already have this equipment already installed on your computer.
If you have a newer MacBook, or pretty much any really new laptop, you may already have a webcam built in. In most cases, Skype will find it and use it automatically. But since I cannot possibly support all of the possible variables, you are going to have to sort that out. You may also find that an external webcam gives you better quality. The MacBooks are pretty good, but all others you will have to try them to find out.
Here is what I know...
For a headset only, you can do much worse than a Logitech ClearChat Comfort USB Headset (Black). Sample prices:
- $31.99 on Amazon.com
- $33.44 at Sears
- $37.88 at Walmart
- $39.99 at Target
There are other brands, like Plantronics for example, that are also dandy, but I am familiar with Logitech, so that is why I choose mention them. go to a store and compare for yourself. Try them on, and see what fits better for you.
USB connection gives you easy setup and great sound quality. Mostly, you just plug it in and it works. You may need to tell some software which microphone or headset to use, but it is pretty straighforward.
WHY NOT GO ALL THE WAY WITH A WEBCAM?
Or for practically the same money, you can go for the full boat with a web camera.
I am a big advocate for all vasculitis patients to get some kind of camera to record their stories as a way of spreading awareness. Just tell the camera the cleaned up version of what you tell your friends and family. It will go a long way towards making the public more willing to contribute time and money for this worthy cause.
But which camera?
I did a lot of research, and many cameras will work well. I personally like the Logitech cameras, because their is a nice A great compromise between quality and affordable price, plus I like how easy their software was to install.
Prices vary depending on how good you want the camera to be.
For most people I recommend the Logitech C310 HD Webcam. Again, good picture, good sound, and a good price. There are more expensive models, but this one will do the job quite nicely with very few compromises. Sample prices:
- $39.99 at BestBuy
- $41.99 at Amazon.com
- $49.99 at Office Depot
- $52.98 at Staples
Just as with the headsets, there are other brands that are also good, like Microsoft webcams are pretty good. I just choose to promote Logitech because I am familiar with them, they are easy to set up, and I like the software.
If you want to mimic my research, to see the quality differences, try starting with the webcam reviews at http://cowboyfrank.net/webcams/index.htm
He puts a number of different cameras through their paces. His most recent reviews are dated September 26, 2010, so they are not too old.
After doing the research, I like Logitech best. I chose that to give webcams to my family so we could all be on the same software as well. The Logitech Vid software is pretty nice and makes connecting a snap.
The webcam will work with any application that calls the camera and/or the microphone.
- Google Voice/Video Chat
- Skype
- Logitech Vid software (Free to download and can be used with any webcam.)
- Microsoft Live
- Yahoo Messenger
- etc, etc, etc, yadda yadda yadda
They all pretty much will work with most any USB webcam.
These better Logitech microphones, like on the C310, are noise cancelling, so you can use them to talk to people hands free instead of using a headset. You just turn down the volume enough to stop the feedback, then you can still hear the other party easily, and they can hear you too.
You can turn the camera part on and off as you choose. You get to turn that on and off in the software. Logitech software even has a feature to allow you to put a picture of your chooseing in place of a live camera feed. Handy for those days when you just don't want to be on camera, but still want to talk with people. Or when you want to turn the camera off for a few minutes to do something off camera, but still hear the other persons voice.
These are great tools for keeping people in touch, and at these prices, most people can afford them. In some ways, since the long distance over the Internet is free, you almost cannot afford not to take advantage of this technology to stay in touch with distant friends and relatives.
I am not trying to tell you what to do, but I will encourage you to share what you know.
Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico
Friday, December 4, 2009
NMVasculitis 2009 Almost Annual Report and 2010 Things to Come
(TIP: Those of you getting Email copies, try reading this online in the blog (http://nmvasculitis.blogspot.com/) if you want to see all the formatting and hyperlinks intact. The blog is also working again inside the website on this page: (http://www.nmvasculitis.org/Home/events/cnmvf-blog-1). Thanks to Google for fixing that code.)
Hello Friends,
It is not quite the end of the year, but I was asked today to describe the NM Chapter of the Vasculitis Foundation so I was inspired to frame my thoughts about who we are and what we do. I thought it might be good to set some of those thoughts down on this electronic page, and share with all of you what I think we have accomplished and what we hope to accomplish next year.
I have long insisted that the eventual "culture" that our chapter embraces, should include the collective personality of all of its members. We have been growing very slowly so that membership has not reached the sort of critical mass necessary to jump start what I would consider a culture.
We have seen some successful grass roots efforts, and some aborted public efforts. I need your help and the help of your friends and families to do more. It is for this reason, among others, that I welcome and encourage you all to participate at monthly meetings more often, and certainly you can also jump in anytime to share your thoughts in the online forums this chapter has made available to you. You are welcome.
YOU ARE ALREADY CONNECTED
You can already reach all of the other chapter members anytime you wish by sending mail to the chapter mailing list at "NMVasculitis Google Group". Ask a question, share some news, whatever. But take that first step. Be bold, and tell us what you think. (If you are shy, then at least tell me what you think.)
In 2010, I want to expand our efforts to make it more of a family affair. I encourage you to invite your friends and family to participate in the chapter meetings and also in the chapter mailing list. If they love you, then they will benefit from learning more about vasculitis, and also from the knowledge that participating in awareness events helps YOU both directly and indirectly.
Start today and let's set a goal to be more active in 2010. Perhaps it will be a launching pad to bigger and better things for all of us!
Here are some other things you can expect...
VASCULITIS AWARENESS WEEK 2010
Never forget Vasculitis Awareness Week - April 25 thru May 1, 2010
We need to plan something to do for this. What do you think we should do? There are ideas abound, but one of the simpler ones is to host a walk. Did you ask How? Well, we get a bunch of friends and family, recruit the junior civitan groups, or recruit classrooms at your childrens and grandchildrens schools, call your neighbors, friends from your churches, etc. Do what you can to get as many people as possible involved to join us and make as big a splash as possible.
Someone, maybe me, can find out if and what kind of permit we might need, and arrange that part. The rest is up to you guys to help this become a success. Maybe it will be the First Annual Walk for Vasculitis? Hey, that has a nice ring to it... come on, you know you want to help me do this, right? :o)
The action is simple. Take a walk around the block wearing a TShirt or carrying some Vasculitis Foundation gear, like flags, or banners. Maybe make one big lap around the University, or around downtown. I like the University idea because it is high exposure, and goes right in front of the UNM Hospital where many of our patients go for clinic. What do you think the route should be?
Hey, we could even do this in multiple cities for maximum exposure. Do you hear me in Las Vegas? Do you hear me in Taos? I will help you get the gear. You get your family and friends to join you and lets make it happen next April!
We alert the media we are going to do this, so they put some cameras on it for some coverage during the 5:00 and 10:00 News hours.
At the end, we could end it in a park someplace where everyone would enjoy some kind of picnic. Maybe potluck, or maybe we get this thing sponsored... I don't know and I need your help to figure it all out. Share what you know and give me your ideas. Then even if you don't walk, help recruit people in your personal circles who will walk on your behalf.
We might ask people to buy the TShirts, since that money goes to the VF for funding research, etc.
If we are especially ambitious, perhaps make it a Walk a Thon... How much per mile would you pay to support vasculitis? Would your child's school be willing to participate en mass for community service? How does that work? Do you know? Come to a meeting and lets form a committee to help figure this out. I am ready to go when you are. It can start small, but I bet once the stone is rolling, it will gather some good momentum.
2010 SYMPOSIUM IN LONG BEACH, CA
Also be aware that the 9th International Vasculitis Foundation Symposium is going to be next summer in Long Beach, California . This is the first time it has been held on the West coast, in Long Beach, California. This makes it much easier for those of us in the Southwest to consider going so that is another reason to go so they know we exist!
Mark your calendars because this symposium is a TREMENDOUS opportunity to empower yourself with new information, and also foster new relationships with other patients who share your symptoms. Attending one of these symposiums is one of the best things you can do to improve your "life with vasculitis." Learn about treatments directly from the top vasculitis specialists in the world, and also find out what hundreds of other patients are doing. Go if you can. Send someone else if you cannot. This is a big opportunity for you to improve your situation.
You can view some of the presentations from 2008 here:
2009 CHAPTER "ALMOST" ANNUAL REPORT
I started out with things to come, so here is how things stand right now with our chapter.
We have about 12 "active" patients, who are on my Email list, and have attended at least one meeting. But they do not always attend meetings. I know of a half dozen more who follow the website and blog, but again, are not attending meetings. There are a few others out there who I know are aware of us because of physician referrals, or because I met them at the infusion clinic and personally gave them a brochure and card, but they have not made contact or come to a meeting.
HOW MANY MORE ARE OUT THERE?
New Mexico has a little over 2 million people, so statistically, there should be how many patients in that size of population? I do not know. What might the predicted breakdown of diagnoses be? I do not know.
I have no idea how large our target audience is other than the somewhat vague guess I can make based on the radius spreadsheet I got from the VF a while back. But that is not based on an empirical number. I think the real number of patients is more likely going to be a reasonably predicted as a smaller statistical variance of the national vasculitis trends. I would sure be interested to know these numbers. Would you?
Does the national office have this kind of information published? Is it already included in some of the information I already have? While planning for my 2010 goal setting, I need to go look again at the Chapter Handbook, the Awareness Handbook, etc, and hit the Internet to find any statistics that shed more light on who these unknown patients are, so I can try to get the message to them more effectively. If you find more information, please send it to me or send it to the group list.
It is a quiet kind of service we provide. I meet a new patient about one every third month, then they sort of fade away for a while. I see them online in Facebook, or by Email, but face to face meetings are more rare, in spite of dedication to host a monthly meeting. Speaking of which...
MONTHLY MEETINGS CONTINUE
I believe that monthly meeting is effective because that meeting is where I meet new patients.
Every month, on the third Thursday, at 6PM, we have a meeting. I will be there. Usually my daughter is there, and often there may be someone else there. Even though attendance can be hit or miss, the concept of holding a regular meeting, at a regular time so people can depend on it, is a good one. Why don't you come and keep me company and catch me up on how you are doing? I will be waiting for you next time at McAllisters Deli in Uptown Shopping Mall, at 6PM on December 17th. Come have a glass of sweet tea, or a piece of pie. Or just a glass of water and conversation. No matter. Just come.
Currently, we are shopping around for a new meeting place, so the monthly meeting can move from one month to the next. Details about the location are always announced on the NMVasculitis Meetings page of the website, and in the NMVasculitis blog, (which you may be reading now if you like to click on the links) and in the NMVasculitis mailing list, and even in the NMVasculitis Calendar. Soooo... you know where to go to find out where we will be.
WEBSITE, BLOG and MAILING LIST
The website and blog, which I just mentioned are also effective, because I sometimes get feedback from some of you by Email after a particularly useful post in the website or blog. The more remote patients especially find this useful since attending a meeting is really tough. Lets all get more active in sharing what we know. You see things in the media, your doctors tells you things, you know things from personal experience. Share what you know and lets all benefit from the collective intelligence we can provide to one another.
WHO ARE WE?
I support patients who live all over NM, mostly from Albuquerque, but also as far away as Las Vegas, NM (123 miles) and Taos (132 miles). Not so many from the southern part of the state, but I do not think they even know this chapter exists yet. I even get contacted by people from other states as far away as Florida. That is more rare, but it happens. I pass them on to a local chapter if I can find one.
HOW DO PEOPLE LEARN ABOUT THIS CHAPTER?
Most often new patients come to me because of a referral from the VF office, or the Mayo Clinic nurses refer them after visiting your support pages, etc. Occasionally, they have heard of our monthly meeting through word of mouth, so that is a hopeful sign that we are starting to gain awareness and recognition. Part of my goal in 2010 is to get better organized with public relations efforts so we can get some media attention. I have not been as aggressive about that as I could.
2009 MAKE-A-WISH NM RECIPIENT IS A VASCULITIS PATIENT
One opportunity to foster awareness is coming up just after Christmas. Meaghan Carpenter has Churg-Strauss Syndrome vasculitis.
You may already be aware that Meaghan is one of the 2009 Make-A-Wish recipients in New Mexico. You may not be aware she is also the only Make-A-Wish recipient in the entire country this year for whom an international travel wish has been granted thanks to a generous donation by Monogram Travel, an international travel company.
Just after Christmas, Make-A-Wish Foundation NM will send her to visit the original "100 Aker Wood" at Ashdown Forest in the county of East Sussex, England. Ashdown Forest is famous as the setting for the Winnie-the-Pooh stories, written by A. A. Milne for his son Christopher Robin Milne. The first book, Winnie-the-Pooh, was published in 1926 with illustrations by EH Shepard.
Winnie the Pooh is sort of Meaghan's totem because of another book based on the character. The wisdom offered in the book, "The Tao of Pooh," by Benjamin Hoff, gave Meaghan the courage to accept the diagnosis of her chronic illness at age 15 with courage and more grace than many might have done under similar conditions. She will also get to see Shakespeare's Globe Theatre and some other sights in London, England. It is beyond imagining how looking forward to this generous gift of a wish has helped to boost her outlook through some tough times over the past year.
Both Meaghan and I will report on this wish experience and I hope to see news of it serve the purpose of increased Vasculitis Awareness.
MEDICAL INFORMATION KITS ARE AVAILABLE FOR YOUR DOCTOR
In 2009, the Vasculitis Foundation arranged with several medical experts to create Medical Information Kits. This is the kind of information only a doctor would be able to understand and use, but the point is it is a big help to jump start any doctor who might not understand your condition.
I would ideally like to arrange for every doctor who treats a vasculitis patient to get a medical information kit sent to them directly from the VF. That is one of my awareness goals for 2010. You can help by telling me about your various doctors: especially their names, addresses, phone numbers, etc, so I can make this happen. You benefit immediately, because once your doctors are better educated about your condition, they will be better able to treat your condition.
I am also privately interested in your feedback about your doctors, but I would not share that publicly. Just knowing who has been naughty or nice to you helps inform my referrals to other new patients. Referring new patients to competent doctors is one of the best things we can do for them to see they get the treatment they need. So I need you to tell on your doctors.
Tell us about your doctors now:
HEALTH FAIRS -- "JUST DO IT" IN 2010 (or maybe 2011)
Another example of public awareness is one boat for which we missed the deadline due to a slow start and an absence of funding. That would be the annual KOB Health Fair New Mexico coming up in January 2010. This health expo exposes about 10,000 visitors to the message, and it is an opportunity to sell or give away awareness items. This event is hosted every year by KOB 4 News, one of our television news stations, and would seem to be a bonanza opportunity to expand awareness. We must absolutely prioritize showing up at events like that if we want to get on the NM Nonprofit awareness map.
It would be a cinch to get a booth. Just pay the $600 fee, and recruit warm bodies to man the booth for two days. I can get a box of brochures from VF National in a heartbeat and we can make up something to decorate the booth creatively. That is all in principle.
What I am finding in practice is that I must push it forward, then hope that the "Popularity Factor" will make more people want to join in and help out. Not only patients, but also family and friends. It will also help to get an earlier start next time.
The one person who immediately volunteered this year is not a patient and her vasculitis friend actually lives in another state. I know more of you would probably join in efforts like this if I do a better job getting things organized sooner. I am learning on the job and I welcome your help.
At a minimum, ANYTIME you hear of an event like this, do let me know ASAP.
As a Plan B, I intend to go to the 2010 KOB Health Fair NM as an attendee, and chat up anyone I can find about the local VF chapter, the national Vasculitis Foundation, and in general spread awareness through sheer determination. Why don't you do the same and perhaps together we can make some contacts that will help us get better organized into 2010 and beyond.
SPONSOR A YOUTH SPORTS TEAM AND NAME THE TEAM
I coach youth sports all the time, and it just occurred to me that I could leverage this exposure to crowds by getting a team sponsor. Then customizing the jersey with a team name like... what would you call a team that was related to vasculitis?
Awkward!! I lack the requisite looseness of mind to do this right now. Send me your ideas about naming a Vasculitis Mascot and maybe you will see it applied to a TShirt or Jersey for a sports team at a field or court near you. People will ask what it means, and you can tell them a story... That is how it works.
FRUITS OF YOUR AWARENESS EFFORTS INCLUDE HELPING MORE PEOPLE
You may have sensed that one of my themes for 2010 is going to be reaching our more to patients, and also to friends and families of vasculitis patients with a secondary purpose of asking them to participate. I wonder sometimes if there are more patients and families out there we could help if only they were aware that help exists. Without an active membership, it is very challenging to even imaging expanding these efforts by myself. But I do it anyway. Am I stupid, or just stubborn? I choose to believe the latter, and keep counting the times I have shared information with people which they say helped improve their situation, and at least let them know they are not alone. Spreading awareness can be as simple as having a conversation.
MORE FUN in 2010
Going into 2010, I am also increasingly mindful now of trying to organize more fun things to do that are not necessarily "vasculitis related," but would inspire people to WANT to attend. Instead of "Come meet me to talk about vasculitis" it would be "Come to this great fun event." Then once they are present, they get exposed to the VF message anyway. Sort of a softer approach. Less serious, but more likely to attract attendance... Like attending a movie, negotiating two for one meal discounts, or even playing Putt Putt Golf. Concerts at the Zoo as a group... Whatever people would like to do, I am open to try.
DECORATING MY TRUCK
I am considering getting a sign made for my truck (which is coincidentally already painted red) to advertise NMVasculitis... How about that? Do you think it is a good idea? Would you put a sign on your car? How about a bumper sticker? What do you think such a sign should say?
INSPIRATION IN THE MEDIA
The upcoming television special on Discovery Health regarding Mystery Diagnosis is inspirational in terms of encouraging one to aim high. Did you know some of that footage was produced by other vasculitis patients? Talk about taking control of your situation! You can watch this next Monday:
Note: Cyndi Webber has MPA vasculitis. They may also make this episode available later as a video podcast.
I am inspired to make more efforts to reach out to our New Mexico media next year, while also keeping up the grass roots methods I have in place now. Part of that is basic boots on the ground stuff like writing more press releases, and arranging for interviews with whoever will listen.
We had a mild attempt at this before from one of our local patients, Karla Kollasch, and arranged by Carlene Hobbs. Karla got about ten seconds of drive time air on 770 KKOB with Steve Villanucci. It turned out to be a less than idea venue, and the exposure was more limited than it could have been.
Getting on a morning talk show like Good Morning New Mexico, or getting on the radio again with a more dedicated interview would be great. Who will join me to make it happen? I will need a patient and/or perhaps a doctor to speak to give it legitimacy. Keep this in mind and lets find out if we can arrange for some exposure.
VF MEMBERSHIP HAS BENEFITS SO JOIN OR RENEW TODAY
I have always put new patients in touch with Shannon Morgan, the Vasculitis Foundation New Patient Coodinator and vice versa, so they should be hopefully be getting to the Vasculitis Foundation on a national level. That brings advantages in terms of getting information from VF that I cannot provide by myself. Mine is actually due now, so I should set the example and take care of that now.
Come to a meeting and I can get you a form, or go online to:
CONCLUSION
I am sharing these thoughts now to let you know some of what I am planning, and also maybe, hopefully, to inspire you to participate more this coming year in the growth of the NMVasculitis Chapter and in planning and executing awareness and education efforts. Several of you have expressed the best intentions and even a willingness to help. Now just do it.
This thing we call Life is a busy thing, and we all need to take it one day at a time. Especially when encumbered with a chronic illness and other family and business concerns. Even so, please make one of those steps this next year in favor of promoting Vasculitis Awareness.
Remember always that Awareness ultimately leads indirectly to research dollars, so go ahead and be selfish by promoting awareness. Help us make more people aware of this condition and aware of the local support options this chapter provides.
Keeping it real, I hope to see you on December 17th at McAllisters Deli in Uptown, or in the Google Group mailing list! If you find news we can use, write it up and send it to me and I will post it in the blog and or on the website. Your contributions are welcome!
Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis
Hello Friends,
It is not quite the end of the year, but I was asked today to describe the NM Chapter of the Vasculitis Foundation so I was inspired to frame my thoughts about who we are and what we do. I thought it might be good to set some of those thoughts down on this electronic page, and share with all of you what I think we have accomplished and what we hope to accomplish next year.
I have long insisted that the eventual "culture" that our chapter embraces, should include the collective personality of all of its members. We have been growing very slowly so that membership has not reached the sort of critical mass necessary to jump start what I would consider a culture.
We have seen some successful grass roots efforts, and some aborted public efforts. I need your help and the help of your friends and families to do more. It is for this reason, among others, that I welcome and encourage you all to participate at monthly meetings more often, and certainly you can also jump in anytime to share your thoughts in the online forums this chapter has made available to you. You are welcome.
YOU ARE ALREADY CONNECTED
You can already reach all of the other chapter members anytime you wish by sending mail to the chapter mailing list at "NMVasculitis Google Group". Ask a question, share some news, whatever. But take that first step. Be bold, and tell us what you think. (If you are shy, then at least tell me what you think.)
In 2010, I want to expand our efforts to make it more of a family affair. I encourage you to invite your friends and family to participate in the chapter meetings and also in the chapter mailing list. If they love you, then they will benefit from learning more about vasculitis, and also from the knowledge that participating in awareness events helps YOU both directly and indirectly.
Start today and let's set a goal to be more active in 2010. Perhaps it will be a launching pad to bigger and better things for all of us!
Here are some other things you can expect...
VASCULITIS AWARENESS WEEK 2010
Never forget Vasculitis Awareness Week - April 25 thru May 1, 2010
We need to plan something to do for this. What do you think we should do? There are ideas abound, but one of the simpler ones is to host a walk. Did you ask How? Well, we get a bunch of friends and family, recruit the junior civitan groups, or recruit classrooms at your childrens and grandchildrens schools, call your neighbors, friends from your churches, etc. Do what you can to get as many people as possible involved to join us and make as big a splash as possible.
Someone, maybe me, can find out if and what kind of permit we might need, and arrange that part. The rest is up to you guys to help this become a success. Maybe it will be the First Annual Walk for Vasculitis? Hey, that has a nice ring to it... come on, you know you want to help me do this, right? :o)
The action is simple. Take a walk around the block wearing a TShirt or carrying some Vasculitis Foundation gear, like flags, or banners. Maybe make one big lap around the University, or around downtown. I like the University idea because it is high exposure, and goes right in front of the UNM Hospital where many of our patients go for clinic. What do you think the route should be?
Hey, we could even do this in multiple cities for maximum exposure. Do you hear me in Las Vegas? Do you hear me in Taos? I will help you get the gear. You get your family and friends to join you and lets make it happen next April!
We alert the media we are going to do this, so they put some cameras on it for some coverage during the 5:00 and 10:00 News hours.
At the end, we could end it in a park someplace where everyone would enjoy some kind of picnic. Maybe potluck, or maybe we get this thing sponsored... I don't know and I need your help to figure it all out. Share what you know and give me your ideas. Then even if you don't walk, help recruit people in your personal circles who will walk on your behalf.
We might ask people to buy the TShirts, since that money goes to the VF for funding research, etc.
If we are especially ambitious, perhaps make it a Walk a Thon... How much per mile would you pay to support vasculitis? Would your child's school be willing to participate en mass for community service? How does that work? Do you know? Come to a meeting and lets form a committee to help figure this out. I am ready to go when you are. It can start small, but I bet once the stone is rolling, it will gather some good momentum.
2010 SYMPOSIUM IN LONG BEACH, CA
Also be aware that the 9th International Vasculitis Foundation Symposium is going to be next summer in Long Beach, California . This is the first time it has been held on the West coast, in Long Beach, California. This makes it much easier for those of us in the Southwest to consider going so that is another reason to go so they know we exist!
For more information see:
2010 Vasculitis Symposium set for July 30 - August 1, 2010 | Vasculitis Foundation
http://www.vasculitisfoundation.org/2010vasculitis-symposium
Mark your calendars because this symposium is a TREMENDOUS opportunity to empower yourself with new information, and also foster new relationships with other patients who share your symptoms. Attending one of these symposiums is one of the best things you can do to improve your "life with vasculitis." Learn about treatments directly from the top vasculitis specialists in the world, and also find out what hundreds of other patients are doing. Go if you can. Send someone else if you cannot. This is a big opportunity for you to improve your situation.
You can view some of the presentations from 2008 here:
Vasculitis Foundation
"8th International Vasculitis Foundation Symposium"
http://www.vasculitisfoundation.org/video
2009 CHAPTER "ALMOST" ANNUAL REPORT
I started out with things to come, so here is how things stand right now with our chapter.
We have about 12 "active" patients, who are on my Email list, and have attended at least one meeting. But they do not always attend meetings. I know of a half dozen more who follow the website and blog, but again, are not attending meetings. There are a few others out there who I know are aware of us because of physician referrals, or because I met them at the infusion clinic and personally gave them a brochure and card, but they have not made contact or come to a meeting.
HOW MANY MORE ARE OUT THERE?
New Mexico has a little over 2 million people, so statistically, there should be how many patients in that size of population? I do not know. What might the predicted breakdown of diagnoses be? I do not know.
I have no idea how large our target audience is other than the somewhat vague guess I can make based on the radius spreadsheet I got from the VF a while back. But that is not based on an empirical number. I think the real number of patients is more likely going to be a reasonably predicted as a smaller statistical variance of the national vasculitis trends. I would sure be interested to know these numbers. Would you?
Does the national office have this kind of information published? Is it already included in some of the information I already have? While planning for my 2010 goal setting, I need to go look again at the Chapter Handbook, the Awareness Handbook, etc, and hit the Internet to find any statistics that shed more light on who these unknown patients are, so I can try to get the message to them more effectively. If you find more information, please send it to me or send it to the group list.
It is a quiet kind of service we provide. I meet a new patient about one every third month, then they sort of fade away for a while. I see them online in Facebook, or by Email, but face to face meetings are more rare, in spite of dedication to host a monthly meeting. Speaking of which...
MONTHLY MEETINGS CONTINUE
I believe that monthly meeting is effective because that meeting is where I meet new patients.
Every month, on the third Thursday, at 6PM, we have a meeting. I will be there. Usually my daughter is there, and often there may be someone else there. Even though attendance can be hit or miss, the concept of holding a regular meeting, at a regular time so people can depend on it, is a good one. Why don't you come and keep me company and catch me up on how you are doing? I will be waiting for you next time at McAllisters Deli in Uptown Shopping Mall, at 6PM on December 17th. Come have a glass of sweet tea, or a piece of pie. Or just a glass of water and conversation. No matter. Just come.
Currently, we are shopping around for a new meeting place, so the monthly meeting can move from one month to the next. Details about the location are always announced on the NMVasculitis Meetings page of the website, and in the NMVasculitis blog, (which you may be reading now if you like to click on the links) and in the NMVasculitis mailing list, and even in the NMVasculitis Calendar. Soooo... you know where to go to find out where we will be.
WEBSITE, BLOG and MAILING LIST
The website and blog, which I just mentioned are also effective, because I sometimes get feedback from some of you by Email after a particularly useful post in the website or blog. The more remote patients especially find this useful since attending a meeting is really tough. Lets all get more active in sharing what we know. You see things in the media, your doctors tells you things, you know things from personal experience. Share what you know and lets all benefit from the collective intelligence we can provide to one another.
WHO ARE WE?
I support patients who live all over NM, mostly from Albuquerque, but also as far away as Las Vegas, NM (123 miles) and Taos (132 miles). Not so many from the southern part of the state, but I do not think they even know this chapter exists yet. I even get contacted by people from other states as far away as Florida. That is more rare, but it happens. I pass them on to a local chapter if I can find one.
HOW DO PEOPLE LEARN ABOUT THIS CHAPTER?
Most often new patients come to me because of a referral from the VF office, or the Mayo Clinic nurses refer them after visiting your support pages, etc. Occasionally, they have heard of our monthly meeting through word of mouth, so that is a hopeful sign that we are starting to gain awareness and recognition. Part of my goal in 2010 is to get better organized with public relations efforts so we can get some media attention. I have not been as aggressive about that as I could.
2009 MAKE-A-WISH NM RECIPIENT IS A VASCULITIS PATIENT
One opportunity to foster awareness is coming up just after Christmas. Meaghan Carpenter has Churg-Strauss Syndrome vasculitis.
You may already be aware that Meaghan is one of the 2009 Make-A-Wish recipients in New Mexico. You may not be aware she is also the only Make-A-Wish recipient in the entire country this year for whom an international travel wish has been granted thanks to a generous donation by Monogram Travel, an international travel company.
Just after Christmas, Make-A-Wish Foundation NM will send her to visit the original "100 Aker Wood" at Ashdown Forest in the county of East Sussex, England. Ashdown Forest is famous as the setting for the Winnie-the-Pooh stories, written by A. A. Milne for his son Christopher Robin Milne. The first book, Winnie-the-Pooh, was published in 1926 with illustrations by EH Shepard.
Winnie the Pooh is sort of Meaghan's totem because of another book based on the character. The wisdom offered in the book, "The Tao of Pooh," by Benjamin Hoff, gave Meaghan the courage to accept the diagnosis of her chronic illness at age 15 with courage and more grace than many might have done under similar conditions. She will also get to see Shakespeare's Globe Theatre and some other sights in London, England. It is beyond imagining how looking forward to this generous gift of a wish has helped to boost her outlook through some tough times over the past year.
Both Meaghan and I will report on this wish experience and I hope to see news of it serve the purpose of increased Vasculitis Awareness.
MEDICAL INFORMATION KITS ARE AVAILABLE FOR YOUR DOCTOR
In 2009, the Vasculitis Foundation arranged with several medical experts to create Medical Information Kits. This is the kind of information only a doctor would be able to understand and use, but the point is it is a big help to jump start any doctor who might not understand your condition.
I would ideally like to arrange for every doctor who treats a vasculitis patient to get a medical information kit sent to them directly from the VF. That is one of my awareness goals for 2010. You can help by telling me about your various doctors: especially their names, addresses, phone numbers, etc, so I can make this happen. You benefit immediately, because once your doctors are better educated about your condition, they will be better able to treat your condition.
I am also privately interested in your feedback about your doctors, but I would not share that publicly. Just knowing who has been naughty or nice to you helps inform my referrals to other new patients. Referring new patients to competent doctors is one of the best things we can do for them to see they get the treatment they need. So I need you to tell on your doctors.
Tell us about your doctors now:
NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors
HEALTH FAIRS -- "JUST DO IT" IN 2010 (or maybe 2011)
Another example of public awareness is one boat for which we missed the deadline due to a slow start and an absence of funding. That would be the annual KOB Health Fair New Mexico coming up in January 2010. This health expo exposes about 10,000 visitors to the message, and it is an opportunity to sell or give away awareness items. This event is hosted every year by KOB 4 News, one of our television news stations, and would seem to be a bonanza opportunity to expand awareness. We must absolutely prioritize showing up at events like that if we want to get on the NM Nonprofit awareness map.
It would be a cinch to get a booth. Just pay the $600 fee, and recruit warm bodies to man the booth for two days. I can get a box of brochures from VF National in a heartbeat and we can make up something to decorate the booth creatively. That is all in principle.
What I am finding in practice is that I must push it forward, then hope that the "Popularity Factor" will make more people want to join in and help out. Not only patients, but also family and friends. It will also help to get an earlier start next time.
The one person who immediately volunteered this year is not a patient and her vasculitis friend actually lives in another state. I know more of you would probably join in efforts like this if I do a better job getting things organized sooner. I am learning on the job and I welcome your help.
Your Ticket to a Healthier Life!
You can be a part of the largest and most comprehensive Health Fair in New Mexico. We saw some 10,000 health-conscience New Mexicans attend the 2009 Eyewitness New 4 Health Fair and we are already expanding for 2010.
Our show hours are:
Saturday, January 23, 2010 9:00 a.m. - 5:00 p.m.
Sunday, January 24, 2010 9:00 a.m. - 4:00 p.m.
Lujan Exhibit Hall at Expo New Mexico (State Fairgrounds)
At a minimum, ANYTIME you hear of an event like this, do let me know ASAP.
As a Plan B, I intend to go to the 2010 KOB Health Fair NM as an attendee, and chat up anyone I can find about the local VF chapter, the national Vasculitis Foundation, and in general spread awareness through sheer determination. Why don't you do the same and perhaps together we can make some contacts that will help us get better organized into 2010 and beyond.
SPONSOR A YOUTH SPORTS TEAM AND NAME THE TEAM
I coach youth sports all the time, and it just occurred to me that I could leverage this exposure to crowds by getting a team sponsor. Then customizing the jersey with a team name like... what would you call a team that was related to vasculitis?
- The Blood Cells
- NMVASCULITIS
- The Eosinophils
- The Prednisones
- The Pred-Ni-Zone
Awkward!! I lack the requisite looseness of mind to do this right now. Send me your ideas about naming a Vasculitis Mascot and maybe you will see it applied to a TShirt or Jersey for a sports team at a field or court near you. People will ask what it means, and you can tell them a story... That is how it works.
FRUITS OF YOUR AWARENESS EFFORTS INCLUDE HELPING MORE PEOPLE
You may have sensed that one of my themes for 2010 is going to be reaching our more to patients, and also to friends and families of vasculitis patients with a secondary purpose of asking them to participate. I wonder sometimes if there are more patients and families out there we could help if only they were aware that help exists. Without an active membership, it is very challenging to even imaging expanding these efforts by myself. But I do it anyway. Am I stupid, or just stubborn? I choose to believe the latter, and keep counting the times I have shared information with people which they say helped improve their situation, and at least let them know they are not alone. Spreading awareness can be as simple as having a conversation.
MORE FUN in 2010
Going into 2010, I am also increasingly mindful now of trying to organize more fun things to do that are not necessarily "vasculitis related," but would inspire people to WANT to attend. Instead of "Come meet me to talk about vasculitis" it would be "Come to this great fun event." Then once they are present, they get exposed to the VF message anyway. Sort of a softer approach. Less serious, but more likely to attract attendance... Like attending a movie, negotiating two for one meal discounts, or even playing Putt Putt Golf. Concerts at the Zoo as a group... Whatever people would like to do, I am open to try.
DECORATING MY TRUCK
I am considering getting a sign made for my truck (which is coincidentally already painted red) to advertise NMVasculitis... How about that? Do you think it is a good idea? Would you put a sign on your car? How about a bumper sticker? What do you think such a sign should say?
INSPIRATION IN THE MEDIA
The upcoming television special on Discovery Health regarding Mystery Diagnosis is inspirational in terms of encouraging one to aim high. Did you know some of that footage was produced by other vasculitis patients? Talk about taking control of your situation! You can watch this next Monday:
Event: Watch "Mystery Diagnosis"
What: Lecture
Start Time: Monday, December 7 at 10:00pm
End Time: Monday, December 7 at 11:00pm
Where: Your living room on the Discovery Channel
Discovery Health :: TV Listings :: Mystery Diagnosis
http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x
Summary:
Mystery Diagnosis
The Boy with the Strange Stare
In 2006 DeAnna and Jonathan Withrow's son Landyn is born; but when they hold him for the first time, they notice his gaze is fixed on the ceiling. In March of 2004 Cyndi Webber notices a bruise on her leg that will not disappear.
Note: Cyndi Webber has MPA vasculitis. They may also make this episode available later as a video podcast.
I am inspired to make more efforts to reach out to our New Mexico media next year, while also keeping up the grass roots methods I have in place now. Part of that is basic boots on the ground stuff like writing more press releases, and arranging for interviews with whoever will listen.
We had a mild attempt at this before from one of our local patients, Karla Kollasch, and arranged by Carlene Hobbs. Karla got about ten seconds of drive time air on 770 KKOB with Steve Villanucci. It turned out to be a less than idea venue, and the exposure was more limited than it could have been.
Getting on a morning talk show like Good Morning New Mexico, or getting on the radio again with a more dedicated interview would be great. Who will join me to make it happen? I will need a patient and/or perhaps a doctor to speak to give it legitimacy. Keep this in mind and lets find out if we can arrange for some exposure.
VF MEMBERSHIP HAS BENEFITS SO JOIN OR RENEW TODAY
I have always put new patients in touch with Shannon Morgan, the Vasculitis Foundation New Patient Coodinator and vice versa, so they should be hopefully be getting to the Vasculitis Foundation on a national level. That brings advantages in terms of getting information from VF that I cannot provide by myself. Mine is actually due now, so I should set the example and take care of that now.
Come to a meeting and I can get you a form, or go online to:
Membership Renewal, US | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/206
or
Membership Renewal, International | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/207
CONCLUSION
I am sharing these thoughts now to let you know some of what I am planning, and also maybe, hopefully, to inspire you to participate more this coming year in the growth of the NMVasculitis Chapter and in planning and executing awareness and education efforts. Several of you have expressed the best intentions and even a willingness to help. Now just do it.
This thing we call Life is a busy thing, and we all need to take it one day at a time. Especially when encumbered with a chronic illness and other family and business concerns. Even so, please make one of those steps this next year in favor of promoting Vasculitis Awareness.
Remember always that Awareness ultimately leads indirectly to research dollars, so go ahead and be selfish by promoting awareness. Help us make more people aware of this condition and aware of the local support options this chapter provides.
Keeping it real, I hope to see you on December 17th at McAllisters Deli in Uptown, or in the Google Group mailing list! If you find news we can use, write it up and send it to me and I will post it in the blog and or on the website. Your contributions are welcome!
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis
Friday, October 16, 2009
October 2009 Chapter News
OCTOBER 2009 Chapter Meeting News
18:00 Thursday, October 15, 2009
This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/
In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)
RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November
Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.
WHERE WOULD YOU LIKE TO GO NEXT MONTH?
If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.
What? Huh? Did you say something? :o)
HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)
Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu She was wanting italian for her birthday dinner, so that fits.
I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu
Are you drooling yet? I nearly was after we ordered.
MOBILIZING THE STUDENT BODY
Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.
I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.
If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.
HALLOWEEN IDEA
Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.
Boo!
WISH YOU WERE HERE
This meeting was more like a dinner, but we did discuss awareness ideas.
We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.
In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.
I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.
I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.
RECRUITING FAMILY & FRIENDS
Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.
Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.
Though rare, there are others out there with vasculitis, and they do not congregate naturally.
Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.
As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.
HEY, WHAT ABOUT THAT GOOGLE GROUP?
I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.
Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.
I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.
Hint: Please share your own stories and ideas so I can include them
with monthly chapter updates. Send me Email!
You can post yourself, or at your request,
or I can quote you anonymously.
Just please let us know how you are doing.
MOVING THE MEETINGS
Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.
For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.
We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu
This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.
People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.
Come and drink water if you like. I will keep the wait person happy
with my innate charm and Meaghan with her good looks.
When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.
GETTING ATTENTION
We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]
The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.
T-SHIRTS FOR AWARENESS IDEAS
Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.
This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.
I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.
In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.
Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.
Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?
Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?
SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY
Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?
I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.
If you start participating actively,
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?
I am reminding myself now to update the Facebook wall page for this chapter.
STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN
Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..
The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.
Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.
For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.
Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.
How to do this in an affordable way? Consider partnering with Cafe Press the online promotions company. They make the stuff as it is ordered and a percentage goes to the sponsoring organization. So, less percentage, but a higher volume. To main tain non-profit status, this must be done at the national level, but it is just possible that if a chapter has their own successful design, then perhaps a bit of the proceeds could also be earmarked to offset chapter or regional awareness event costs. Not just because, but when there is an event, it would be easier to request a budget if you know your chapter is also producing income. Hmmm....
Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.
Hello Vasculitis Foundation (VF)?
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?
Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.
One final thought as we are actually standing up to leave CPK.
If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.
Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.
Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
18:00 Thursday, October 15, 2009
This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/
In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)
RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November
Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.
That article is good enough I may repost it in this blog.
If you get a second copy, just know I am also sharing it with others.
If you get a second copy, just know I am also sharing it with others.
WHERE WOULD YOU LIKE TO GO NEXT MONTH?
If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.
**ooOO Yes, Master, we can go to Hawaii
and have a luau on a moonlit beach at night... OOoo**
and have a luau on a moonlit beach at night... OOoo**
What? Huh? Did you say something? :o)
HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)
Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu
I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu
Are you drooling yet? I nearly was after we ordered.
MOBILIZING THE STUDENT BODY
Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.
I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.
If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.
HALLOWEEN IDEA
Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.
WISH YOU WERE HERE
This meeting was more like a dinner, but we did discuss awareness ideas.
We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.
In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.
I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.
I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.
RECRUITING FAMILY & FRIENDS
Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.
Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.
The bottom line is to eat, drink and be merry. I want our organization to espouse the notion that especially with a rare disorder like vasculitis, people should be encouraged to enjoy life.
Though rare, there are others out there with vasculitis, and they do not congregate naturally.
Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.
As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.
HEY, WHAT ABOUT THAT GOOGLE GROUP?
I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.
Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.
I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.
with monthly chapter updates. Send me Email!
or I can quote you anonymously.
Just please let us know how you are doing.
MOVING THE MEETINGS
Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.
For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.
We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu
This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.
People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.
with my innate charm and Meaghan with her good looks.
When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.
GETTING ATTENTION
We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]
The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.
T-SHIRTS FOR AWARENESS IDEAS
Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.
This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.
I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.
In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.
Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.
Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?
Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?
SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY
Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?
Whois contact data:TWITTER IS COMING SOON TO A WEB SITE NEAR YOU
Admin ID:MONIKER1788507
Admin Name:Karl-Oskar
Admin Organization:Filter Visual DA
Admin Street1:Dronningensgate 29
Admin Street2:co/Karl-Oskar Fosshaug
Admin Street3:
Admin City:Narvik
Admin State/Province:Narvik
Admin Postal Code:NO-8514
Admin Country:NO
Admin Phone:+47.90123466
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin *******@rl-oskar.no
I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?
I am reminding myself now to update the Facebook wall page for this chapter.
STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN
Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..
The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.
Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.
For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.
Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.
How to do this in an affordable way? Consider partnering with Cafe Press
Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?
Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.
One final thought as we are actually standing up to leave CPK.
If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.
Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.
Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Thursday, September 17, 2009
September Chapter Meeting Report
Location:
Joseph Carpenter
Meaghan Carpenter
I will keep this short because Meaghan is not feeling well.
We enjoyed the change of pace here at McAllisters. They have booths or chairs and free wireless. It is also not too busy in the evenings, so this is a good place.
The menu is varied enough that someone could have a full dinner, soup, sandwich, or just a cup of coffee or tea. The point is I like to pick places that have a range of price options.
The Uptown Mall is a bit more upscale than some other places, but I will keep looking in this area for next months meeting. I like that is is centrally located. While The Albuquerque Grill was technically more centrally located if you look at the absolute center of the city, this uptown mall area has three malls and is well known by everyone who lives in the area.
We will be exploring other venues and also we will be going to social events. Like movies, the zoo, etc. My thought there is any active members will share in the decision about where we go each month. We will wear VF gear and just keep spreading the word about vasculitis. Just like we do just about every day.
I wear the VF pin every day and people ask me about that, which leads to a conversation about vasculitis. Not sure how widely that spreads the news, but I figure every bit helps.
I also spoke to some booth bolders at the NM State Fair yesterday, and learned who the significant people are to talk to when we get ready to try that. This year I just could not see manning a booth by myself for two weeks. Plus there is a booth fee, and we have no budget. But that is on the list for the future.
Perhaps I could trade time for space in a deal where we man someone else's booth for part of the time, and in return they allow us to put VF information on their table. I will speak to American Red Cross, etc, about that idea for future events.
Anyway, we are off to look at the bookstore. See you next month!
:Joseph W. Carpenter
Chapter Cook and Dish Washer in Chief
McAlister's Deli
2200-A Louisiana Boulevard, NE
Albuquerque NM 87110
Attendees:Joseph Carpenter
Meaghan Carpenter
I will keep this short because Meaghan is not feeling well.
We enjoyed the change of pace here at McAllisters. They have booths or chairs and free wireless. It is also not too busy in the evenings, so this is a good place.
The menu is varied enough that someone could have a full dinner, soup, sandwich, or just a cup of coffee or tea. The point is I like to pick places that have a range of price options.
The Uptown Mall is a bit more upscale than some other places, but I will keep looking in this area for next months meeting. I like that is is centrally located. While The Albuquerque Grill was technically more centrally located if you look at the absolute center of the city, this uptown mall area has three malls and is well known by everyone who lives in the area.
We will be exploring other venues and also we will be going to social events. Like movies, the zoo, etc. My thought there is any active members will share in the decision about where we go each month. We will wear VF gear and just keep spreading the word about vasculitis. Just like we do just about every day.
I wear the VF pin every day and people ask me about that, which leads to a conversation about vasculitis. Not sure how widely that spreads the news, but I figure every bit helps.
I also spoke to some booth bolders at the NM State Fair yesterday, and learned who the significant people are to talk to when we get ready to try that. This year I just could not see manning a booth by myself for two weeks. Plus there is a booth fee, and we have no budget. But that is on the list for the future.
Perhaps I could trade time for space in a deal where we man someone else's booth for part of the time, and in return they allow us to put VF information on their table. I will speak to American Red Cross, etc, about that idea for future events.
Anyway, we are off to look at the bookstore. See you next month!
:Joseph W. Carpenter
Chapter Cook and Dish Washer in Chief
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