CNMVF Chapter Meeting for February 19

Hello all,

Sitting here in the Rio Grande Inn at the Albuquerque Grill. I ate the popeye salad (Yum!) and Meaghan ordered enchiladas for dinner. The food here is very tasty. You who have not yet sampled it should come to the meeting next month and give it a try.

HAPPY SURPRISE -- WISH GRANTED
The big news this month is that Meaghan Carpenter has been granted a wish by the Make-A-Wish Foundation. Her doctor submitted her for consideration because Meaghan is sixteen and has Churg-Strauss Vasculitis with all the associated steroid effected yucky trimmings.

Meaghan had a mostly good year in 2008, all things considered. However, in January 2009, she was injured when a floor collapsed under her. She suffered major trauma to her right leg. This complimented, though not in a good way, the nerve pain in her left foot. This injury was deep to the bone, and not a small thing. After a month it is still healing. She also shows some signs of possibly facing a flare, but we are not sure yet. Just watching ugly sinusitis and stomach pain, increased nerve pain, etc, and hoping it is “just the flu.“

With all that bad stuff happening, this wish is a big deal for Meaghan. She is currently thinking about going to Disney World to have breakfast or lunch with Winnie-The-Pooh. The significance is that Pooh is her totem, and her happiness when dealing with vasculitis has been largely centered on wisdom gained from the book, “The Tao of Pooh,” by Benjamin Hoff. Pooh is her pal. She only found out about the wish last week, so she still has time to refine her choices. More about the Make-A-Wish Foundation at the web site: http://www.wish.org/ . Sometimes, good things can happen to good people.

BIG BUCKS, OR MEDIUM BUCKS AT LEAST
I was contacted just today about a donation of several thousand dollars from a family in New Mexico that has been earmarked for vasculitis. Those proceeds will go to the Vasculitis Foundation for funding seed grants. More on that later when I have more details and a story to tell.

AWARENESS EFFORTS
At this chapter meeting, we have been talking about ways to step up the awareness efforts this year. Earlier this morning I added a new page to the nmvasculitis.org website for “Awareness Ideas“. This will be just a virtual stack of 3x5 cards in the sky for posting ideas. Later we can talk about which ideas should be acted upon. I have a bucket full of ideas, and will figure out which ones we can act on considering our limited membership thus far. That is located here: http://www.nmvasculitis.org/Home/events/awareness-ideas .

Rare Diseases Day is coming up in about nine days on February 28. I did not have a concrete plan for that, but am thinking now to take that day to go around and pass out VF brochures to the rheumatology clinics in town. Maybe if I can swing it, I will also take donuts for the doctor’s staff to make it memorable for them as well. If you can help, please let me know so we can coordinate our efforts, and so I can get you the brochures.

We still have several ideas simmering for later this Spring. There are plans brewing slowly in some quarters for a youth baseball tournament. We do not have to run the baseball part of it. Our chapter will only need to pick up the promotions side to let people know, and we need to get volunteers out there to pass out brochures, sign people up for memberships if asked, and possibly sell some vasculitis promotional items. The main idea is to spread awareness. I would also like to let every event launch into a new connection of some kind so there will be schmoozing going on as well. I will be finding out about how to obtain a banner or two to help with visibility.

In May, we will have a double whammy with the Vasculitis Awareness Week nesting into Autoimmune Disorder Month. That is one week when we would like to have at least one active event that has yet to be planned. It is possible the baseball thing will work out for that week, but that is not yet firm.

I made inquiries recently about hosting a Pampered Chef home show. Let me know if you would like to participate. The food should be yummy, and the products they sell are pretty nice. More details on that also as it unfolds.

That leaves one other idea that will hopefully get some of you vasculitis patients and supporters out of your house to go the chapter meetings. There are nearly a dozen people on my list, but no regular attendees at monthly meetings. No guilt trip here, but for this to work we need to get you all together to share ideas and support. To motivate you to come, I am planning something special if you go for it.

INVITE A VASCULITIS DOCTOR TO DINNER
I am going to invite a doctor to dinner. So at the next monthly meeting there may be a vasculitis specialist present to share ideas and hear your concerns. For that doctor dinner to work I really need to hear from you ASAP. I want that event to be attended by at least four patients to consider it a success. If you are interested in meeting a vasculitis specialist in an intimate setting, please let me know now. Otherwise I will table that idea for a later date when our active membership grows a bit.

I am also giving out a door prize to first timers to a meeting. What is it? What could it be? It is something simple, but pretty cool. You will have to come to a chapter meeting to find out! :o)

Well folks, the clock is spinning up to eight o’clock now with just me and my wish girl here, so I think I may call it a night. If you get here late, I left some VF Brochures at the maitre d’ station up front at the Albuquerque Grill.

: Joseph Carpenter
Contact
Albuquerque, NM
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org