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

Chapter meeting today, February 19, 2009

I hope to see you there.

I will be giving a door prize to new members who attend meetings.

I will also have literature available about the various types of vasculitis. We will discuss general topics about vasculitis, and we will discuss upcoming awareness events, and discuss ideas for events for our chapter.

Movie night?
Take a doctor to dinner?
Participate in Run for the Zoo and set up a booth?
Host our own event to draw media attention?

What are your thoughts? Send them to me or come to the meeting and lets talk about it.

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

"Expect trouble as an inevitable part of life, and when it comes, hold your head high, look it squarely in the eye and say, 'I will be bigger than you. You cannot defeat me.'"
Ann Landers (1918 - 2002)

Rare Disease Day 2009

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives

Thus the aim of the day is to reinforce their importance as:

1. A public health priority

2. The need for Centres of Expertise

Other main objectives of Rare Disease Day are to:

1. Raise awareness on rare diseases

2. Strengthen one voice of patients

3. Give hope and information to patients

4. Bring stakeholders closer together

5. Coordinate policy actions in different countries Inspire continued growth of the awareness of rare diseases

6. Get equity in access to care and treatment Awareness raising events will take place in each participating country.

7. To find out what is happening in your country, click here.

Who can take part?

Anyone who wants to - everyone’s invited!

Rare Disease Day 2009 is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level.The more participants, the more impact for the Day, and the more we’ll be able to do for patients. If you are a patient or an organisation representing patients with rare diseases, tell your story here.

Ideas for supporting the campaign:

• Coordinate letter writing or email campaign to local or national policy and decision makers
• Send a press release to the media
• Organise a visit of an MEP/ health minister to a Centre of Expertise
• Organise interviews with the media
• Organise fund-raising events
• Organise events around rare diseases and the topics at heart of patients
• Approach a special/VIP to be the patron of the day
• Give awards to people who have acted for the cause of rare disease patients
• Hold a competition centred on rare diseases
• Set up a help line to respond to enquiries
• Display posters, images or other awareness raising displays
• Distribute stickers and flyers
• Make appointments to meet with your local & national authorities

Local vasculitis patient to become a Make-A-Wish recipient

Our own chapter member, Meaghan Carpenter, who is a Churg-Strauss Syndrome vasculitis patient has been approved to receive a wish from the Make-A-Wish Foundation.

She learned of this today and now must decide what she would wish for. More on this story later as event unfold.

When dealing with chronic illness, there is sometime a little silver lining in among the clouds.

Good luck with your wish Meaghan!

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