Hello everyone!
CHAPTER MEETINGS?
We met August 28, and have not met since. September was busy and some people were traveling. Still, most agree that it is necessary to hold regular meetings, so I will commit to that goal right now.
There was a tentative plan to try for a meeting on October 30, but one thing led to another and that was not confirmed. So it is being rescheduled for November. Chalk it up to growing pains folks, but we must allow enough time to get a mailing out to the VF members who might want to attend.
What is a chapter meeting?
The way I see it, this is basically a social event that is also part support group, and part planning meeting for things we can do to promote awareness and increase education about vasculitis.
Those who attend can and do share their stories and talk about the things that work and don't work to help manage their vasculitis condition or that of a loved one.
It is open to all vasculitis patients, and caregivers, and also to friends and family of patients and caregivers who want to know more, or who have something to contribute. If you were struggling with the question, "What can I do?" then come to a meeting and get some ideas.
VASCULITIS AWARENESS WEEK
For VF Awareness week (September 21-28) this chapter sent announcements regarding the online Webinar that was helpd on September 22. That was a first time effort and there were some issues. I am still waiting new on when it will be rehosted, or when the presentations might be available online. When I know, I will post that in this blog.
Some of that information repeats what was covered at the 2008 Vasculitis Patient Symposium in June 2008. You can get DVDs of many of the various seminars at the Vasculitis Foundation Store.
The other purpose of that announcement was to initiate contact with the rheumatology clinics in Albuquerque. Most did not respond, but we will keep at it until they understand they have resources also. The key to increasing awareness is constant persistent sharing of what we know.
Hey, how about a chapter T-Shirt? People wear this and it draws attention to Vasculitis.
Are you wearing a Vasculitis pin? Maybe a sticker?
Do you have a Vasculitis Foundation bumper sticker or ribbon magnet?
Do you need holiday cards? VF is selling some very nice holiday items right now.
You can get these items at the Vasculitis Foundation Store online. Check that out now and support VF research with your purchases, while also promoting awareness.
NM Vasculitis Doctors
This online resource is growing slowly. We have some of the rheumatologists listed. is your doctor listed? If you know of a doctor, in any field, who has experience treating vasculitis, please take a minute right now, and go fill in the form: NM Vasculitis Doctors Form.
I have already spoken to a woman who had vasculitis symptoms, and struggled without a diagnosis for years. She had no idea where to go. By collecting contact information about vasculitis doctors in New Mexico, I was able to help her get in touch with a doctor who could at least confirm her diagnosis. Of the things we can do, this is a big step in the right direction. Won't you please help?
Happy Halloween everyone!
: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating six months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org
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