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.

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

Also, remember that I have offered to help film patient and caregivers videos. Contact me if you are interested.

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....

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!

More info here:

http://www.bioparksociety.org/runforthezoo/

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.

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

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.

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 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?

• 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