NMVasculitis Chapter January Meeting , for real this time

Here is the deal.

Last week, we went to McAllisters Deli in Uptown, and held a meeting. I have been swamped lately with work, and coaching, and so I guess I got ahead of myself, so count that an extra meeting.

Tonight is actually the third Thursday, and tonight January 21st is the date marked on the calendar. So, I will go again tonight. However, I will likely only stay about a half hour, drink some sweet tea, maybe have some pie. Then if you show up, we can have a meeting. If not, then I will go on home after 6:30PM. Be there or be square.

Fair enough?

I really do hope to see you there, so come if you can.

Need directions? Check this out...

Meetings (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/meetings

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010
when we all come together for a single purpose -- to raise awareness.

Chapter Meeting tonight at McAllisters. See you at 6PM!

Just a quick reminder that we have a chapter meeting tonight at 6PM. Location is McAllisters.

Hope to see you there!

Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis

Vasculitis Clinical Research Consortium Update

Hey everybody,

The VCRC is one of the main sources of hope for vasculitis patients. These are your white knights, out there in the laboratories, searching for ways to improve your condition, and ultimately a cure for vasculitis.


If you will take a few minutes to explore the opportunities, then if possible participate in one or more of the studies. Many are just questionaires you can fill in to give them more information. More data for a researcher gets them just that much closer to the cure. Read on... -- Joseph



Visit us at: www.RareDiseasesNetwork.org/vasculitis

Dear Joseph Carpenter,

Update from the VCRC
The Vasculitis Clini! cal Research Consortium (VCRC) is extremely pleased to report that our grant application for renewal of support for the Consortium was successfully refunded another five year period by the National Institutes of Health, specifically the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Office of Rare Diseases Research (ORDR).
This is obviously a major milestone for our group and the result of incredibly hard and high-quality work by all of us. Combined with funding for other studies, we will continue to have the resources to advance and successfully complete our ambitious and exciting research agenda.

VCRC contact registry study, coming soon!
We are making plans to expand the use of the contact registry to allow registered patients to directly take part in research in vasculitis via the internet. We are excited to announce our first planned research project will be the VCRC Study of Reproductive Health in Vasculitis. This study, which will include both women and men, is expected to start next spring. We are also developing a VCRC Pregnancy Registry that should be ready later in 2010.

Living with vasculitis, Lindsay's story
"Exhaustion, pain, and overall sense of illness...these are all words that come to mind as a patient with Takayasu's Arteritis. I have always been an athlete, playing both field hockey and softball in college. With each year of college, I progressively became more fatigued and found it more difficult to keep up with my teammates at practice. Shortly after graduating, I was diagnosed with Takayasu's Arteritis in 2003. Only months later my doctors would discover that my left subclavian artery was completely blocked and I would need bypass surgery. Being 22 at the time, I didn't know what to expect, TA is a rare auto-immune disease that has very little history of studies or explanations to why. Dr. Merkel and the VCRC have given me a positive outlook on living with a chronic, rare disease. Their personal approach and tremendous support has been a driving force for my mother's annual 'Walk This Way' Takayasu's Arteritis Fundraiser. Having Boston Medical Center's CEO, Elaine Ullian, personally thank my family for our efforts has proven their dedication to their patients. The VCRC has opened new doors to their TA patients, proving through their new and advanced studies that their end goal is ultimately the patient."

Learn more about the VCRC: www.RareDiseasesNetwork.org/vcrc

Learn more about our current trials: www.RareDiseasesNetwork.org/vcrc/takeaction/findatrial.htm

We wish you all a healthy and happy New Year!

Official Announcement: 2010 International All Star Vasculitis Symposium

Register Now to Attend the 2010 International

All Star Vasculitis Symposium

On behalf of the Vasculitis Foundation, we invite you to attend the 2010 International All Star Symposium to be held at the Westin Long Beach Hotel, Long Beach, California, on July 30 through August 1, 2010.    

Don't miss this opportunity to invest in your future health and

well-being by expanding your knowledge and understanding

of vasculitis needed to address your health concerns.

The Symposium will bring together the "stars" of vasculitis -- our patients, family members, caregivers, and medical experts.  All the vasculitides will be covered and we will concentrate on advances in medical treatments, research, quality of life issues, and integrative medicine.

"This Symposium will help us move forward by reviewing the latest findings in the field and examining future directions.   It holds great promise to improve the lives of those living with vasculitis." - Joyce Kullman, Executive Director, Vasculitis Foundation.

Visit the VF website at http://www.vasculitisfoundation.org/2010vasculitis-symposium for a complete, detailed packet of information including: Schedule; Speakers' List; Long Beach Attractions; Hotel Information; Airports/Airlines and Ground Transportation; Childcare; Registration Form and Pre-Attendee Survey Form; Pick-A-Basket Drawing, etc.  

Register today online or by downloading and printing the Registration Form or by calling the VF office at 800-277-9474. 

We look forward to seeing you in Long Beach. 

Joyce A. Kullman, Executive Director

Vasculitis Foundation