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)
Friday, December 7, 2012
Thursday, July 19, 2012
2012 Vasculitis Symposium in Atlanta
Meaghan and I are on our way now to Atlanta to attend the Vasculitis Patient Symposium. Lots to learn, and we look forward to touching base with other patients and caregivers.
Attending a Vasculitis Foundation symposium presents a rare opportunity to swap stories and compare notes with other people who truly know what it means to live with vasculitis.
Plus we get to attend presentations by some of the doctors who are leading the way in vasculitis research. They often present information as much as a year or more before it os published in medical journals. Another reason to go.
Symposia are held every other year, so we save up our reward miles so we can go.
If you have ever felt alone with your condition, consider attending a symposium. Meeting hundreds of other people who know vasculitis will change your perspective.
If you want to take it one step farther, get involved and volunteer. Taking control of things like promoting awareness can actually help you feel better.
Wishing you all well, and I truly mean that,
Joseph Carpenter
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, June 4, 2012
Are you going to Atlanta in July?
Are you going to Atlanta in July?
More information about that event can be found here:http://www.vasculitisfoundation.org/2012atlantasymposium
Let me know if you are going, and I will look for you there. Perhaps we can sit together at one of the functions.
Meaghan and I saved up reward miles, and it turns out we will be going after all, even though I still prefer the longer symposium format.
FYI for those who need to know... I recently wrote up some information about how to get from the airport to the hotel. It is now included as a link on the event page on the VF website, and you may have seen this show up on Facebook:
Public Transit options for 2012 Atlanta Symposium for those who want to know their options. http://goo.gl/JxZLR. Includes info for taxi, shuttle, trains and buses from most expensive to least expensive. Did you know you can take the train and a bus and will walk less than 5 minutes for $2.50?
What about something closer to home...
Are you coming to the chapter meeting
this coming Saturday, June 9th at 3PM?
I saved up my calories and plan to have a big frozen yogurt for myself.
Come join me at Deli-Berry and we will have a nice chat and talk about some of the latest and greatest in your life and mine. Fi you are a new patient, come on down and we can get you started on the right path to becoming a better self advocate.
Deli-Berry
2520 Jun Tabo Blvd NE
Albuquerque, NM 87113
We meet at 3PM on June 9th. I hope to see you there.
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/
Tuesday, April 17, 2012
Attend the 2012 Vasculitis Symposium Webinar
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Saturday, April 14, 2012
Are you going to Chicago next week?
As I prepare to go host our chapter meeting today, I think the main thing on my mind is all the hard work taking place to grow the Vasculitis Foundation so that patients everywhere can benefit from improved education awareness and research programs. There are projects going on behind the scenes to improve education services for patients, and bring you into closer contact with other patients to share support.
The Vasculitis Foundation is the number one private fundraising organization for research into better treatments and an eventual cure for these horrible conditions. The more I learn about the Vasculitis Foundation, the more I am determined to help.
You want a cure? Then one of your best bets is Donate to the Vasculitis Foundation.
The best way you can help immediately, is by becoming a member. As your friends and family to become members of the foundation, and then be sure to renew your memberships. Consider contributing again when you can. Almost all funds go towards funding the research. If you like, you can even specify which programs you want your contribution to support.
The second thing on my mind is the upcoming Vasculitis Foundation Patient Symposium next week in Chicago.
There are actually two main Vasculitis Symposia for patients this year:
Chicago on April 21.
Atlanta on July 21.
Check out the Vasculitis Foundation website for more information and to make arrangements to attend.
These are outstanding opportunities for new patients especially to learn more about vasculitis, and also to meet other patients face to face. How long have you been struggling with your condition alone. Nobody else really gets it, right? Some people are understanding, but they can only support you. Others wonder when you will get better, as if they do not understand the meaning of the word, "incurable condition."
Vasculitis is very rare, but at the symposia, you have a chance to be among several hundred patients and caregivers with issues very similar to your own. It is a rare opportunity for sufferers of these rare conditions.
The other benefit is getting to attend presentations by some of the world's foremost vasculitis researchers and clinicians. No doctor knows it all, but these people know than most about vasculitis: How to diagnose it, and how to treat it.
When better treatments are developed the Vasculitis Foundation will be right there to report it. When a cure is found, the Vasculitis Foundation will be there to ring that bell and let the world know.
Become a member, and consider attending one or more symposia to get connected and learn more about these conditions.
And if you feel like talking about other ways to gain support and spread awareness locally, come meet me at one of the monthly meetings.
You dont need a reminder from me. Mark your calendars or subscribe to the chapter Google calendar so it updates automatically when I add or update an event.
Hope to see you there.
The Vasculitis Foundation is the number one private fundraising organization for research into better treatments and an eventual cure for these horrible conditions. The more I learn about the Vasculitis Foundation, the more I am determined to help.
You want a cure? Then one of your best bets is Donate to the Vasculitis Foundation.
The best way you can help immediately, is by becoming a member. As your friends and family to become members of the foundation, and then be sure to renew your memberships. Consider contributing again when you can. Almost all funds go towards funding the research. If you like, you can even specify which programs you want your contribution to support.
Learn more about ways to contribute at the Vasculitis Foundation website:https://contribute.vasculitisfoundation.org/getinvolved
The second thing on my mind is the upcoming Vasculitis Foundation Patient Symposium next week in Chicago.
There are actually two main Vasculitis Symposia for patients this year:
Chicago on April 21.
Atlanta on July 21.
Check out the Vasculitis Foundation website for more information and to make arrangements to attend.
VF ANNOUNCES LOCATIONS FOR 2012 SYMPOSIA LOCATIONShttp://vasculitisfoundation.org/node/4591
These are outstanding opportunities for new patients especially to learn more about vasculitis, and also to meet other patients face to face. How long have you been struggling with your condition alone. Nobody else really gets it, right? Some people are understanding, but they can only support you. Others wonder when you will get better, as if they do not understand the meaning of the word, "incurable condition."
Vasculitis is very rare, but at the symposia, you have a chance to be among several hundred patients and caregivers with issues very similar to your own. It is a rare opportunity for sufferers of these rare conditions.
The other benefit is getting to attend presentations by some of the world's foremost vasculitis researchers and clinicians. No doctor knows it all, but these people know than most about vasculitis: How to diagnose it, and how to treat it.
When better treatments are developed the Vasculitis Foundation will be right there to report it. When a cure is found, the Vasculitis Foundation will be there to ring that bell and let the world know.
Become a member, and consider attending one or more symposia to get connected and learn more about these conditions.
And if you feel like talking about other ways to gain support and spread awareness locally, come meet me at one of the monthly meetings.
I will be at Deli-Berry on the second Saturday of every month at 3PM. DeliBerry is located at 2520 Juan Tabo Blvd NE, Albuquerque, NM.
You dont need a reminder from me. Mark your calendars or subscribe to the chapter Google calendar so it updates automatically when I add or update an event.
Hope to see you there.
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.
Vasculitis Foundation Video Project
Will you tell me your story?
The Vasculitis Foundation is preparing a special video for the symposium in Chicago, featuring stories by patients just like you. This is at the international level of awareness.
See the Vasculitis Awareness Channel on YouTube:
http://www.youtube.com/user/vasculitisawareness
We need YOUR help. Check out the Video Project Guidelines in the links on the YouTube Channel.
You are encouraged to prepare a 2-4 minute version of your story, and share that with the Vasculitis Foundation. These stories about real people with vasculitis will put human faces on this condition and increase public awareness.
Increased public awareness helps you too, because when more people become aware of this condition, then we expect more people will contribute to the cause. Either as volunteers or as financial contributors to research. We will eventually use this body of patient stories to help support grant requests to federal research programs and to major pharmaceutical companies, who provide funding for research into better treatments and an eventual cure.
It all starts with you. All ages welcome, all diagnoses of vasculitis should be represented, plus family and caregivers too! Don't be shy. Check out the YouTube Channel, and you will see other people telling their stories soon. We are in this together.
Now, to make this easier for you. I can help those of you who live in New Mexico.
I have access to the equipment, and will by appointment, meet you anyplace that is convenient for both of us to record your story. I will even travel to meet you in your home town if you are willing to meet with me. We can record your story as many times as it takes for you to feel comfortable with the results.
I cannot emphasize enough how dramatic the results of this video project could be, both to you, and to other patients who may see your story and know they are not alone.
For more information, check out the Vasculitis Awareness Channel on YouTube, and review the Vasculitis Foundation Video Project Guidelines.
If you are able and willing to record your own video, perhaps with the help of a family member, then please let me know you plan to create a video. You can also contact me if you want my help recording your story.
Don't want to do a video?
Then send me a nice photograph of yourself and a typed version of your story. I would like to know your stories anyway, and I can make sure it gets where it needs to go. We cannot publish all of the videos anyway, but there is a page on the Vasculitis Foundation website where your story can be presented. See this page for examples: http://www.vasculitisfoundation.org/patientstories
Thank you for your consideration.
Joseph Carpenter
Chapter Leader
Vasculitis Foundation in New Mexico
The Vasculitis Foundation is preparing a special video for the symposium in Chicago, featuring stories by patients just like you. This is at the international level of awareness.
See the Vasculitis Awareness Channel on YouTube:
http://www.youtube.com/user/vasculitisawareness
We need YOUR help. Check out the Video Project Guidelines in the links on the YouTube Channel.
You are encouraged to prepare a 2-4 minute version of your story, and share that with the Vasculitis Foundation. These stories about real people with vasculitis will put human faces on this condition and increase public awareness.
Increased public awareness helps you too, because when more people become aware of this condition, then we expect more people will contribute to the cause. Either as volunteers or as financial contributors to research. We will eventually use this body of patient stories to help support grant requests to federal research programs and to major pharmaceutical companies, who provide funding for research into better treatments and an eventual cure.
It all starts with you. All ages welcome, all diagnoses of vasculitis should be represented, plus family and caregivers too! Don't be shy. Check out the YouTube Channel, and you will see other people telling their stories soon. We are in this together.
Now, to make this easier for you. I can help those of you who live in New Mexico.
I have access to the equipment, and will by appointment, meet you anyplace that is convenient for both of us to record your story. I will even travel to meet you in your home town if you are willing to meet with me. We can record your story as many times as it takes for you to feel comfortable with the results.
I cannot emphasize enough how dramatic the results of this video project could be, both to you, and to other patients who may see your story and know they are not alone.
For more information, check out the Vasculitis Awareness Channel on YouTube, and review the Vasculitis Foundation Video Project Guidelines.
If you are able and willing to record your own video, perhaps with the help of a family member, then please let me know you plan to create a video. You can also contact me if you want my help recording your story.
Don't want to do a video?
Then send me a nice photograph of yourself and a typed version of your story. I would like to know your stories anyway, and I can make sure it gets where it needs to go. We cannot publish all of the videos anyway, but there is a page on the Vasculitis Foundation website where your story can be presented. See this page for examples: http://www.vasculitisfoundation.org/patientstories
Thank you for your consideration.
Joseph Carpenter
Chapter Leader
Vasculitis Foundation in New Mexico
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.
Subscribe to:
Posts (Atom)