May is Vasculitis Awareness Month

What can you do?

CAN you talk? Then tell everyone you meet about the Vasculitis Foundation. What it is, what they do, and why they should contribute.

CAN you walk, roll, hop, or crawl? Get your own Vasculitis Foundation T-Shirt and wear it proudly anytime you are out and about. When people ask you what it is, tell them. If you attend a fun run, wear your Vasculitis Foundation gear instead of their T-Shirt. You can wear that later. When people ask you why, tell them.

CAN you drive? Consider putting a Vasculitis Foundation bumper sticker on your car. Spread awareness while driving around town. Give them to your friends and family as well.

CAN you involve friends and family? When they ask if there is anything they can do, and you usually say no... stop telling them no. Instead tell them to consider making a contribution by becoming a member of the Vasculitis Foundation, then donate, volunteer, and advocate for vasculitis patients every day.

You CAN tell people about vasculitis. The power of one voice is stronger than you may know. Tell people about vasculitis everywhere you go. Get some brochures from your chapter leader and pass them out at your doctors office, and give them to people you meet. You tell one person, then they mention it to others, and awareness spreads like a virus. Together, we can make a difference.

You can get your Vasculitis Foundation Official T-Shirts, bumper stickers, and other gear from the VF Store: https://contribute.vasculitisfoundation.org/store

May Chapter Meeting Coming Up on May 12, 2012

This is Vasculitis Awareness Month. What to talk about it? Why not show your awareness by coming to a chapter meeting!

Every second Saturday at 3PM we meet at: 

Deli-Berry, 2520 Juan Tabo Blvd NE, Albuquerque, NM. MAP 

For more information:

Contact your chapter leader, Joseph Carpenter. He really would like to hear from you anyway. Awareness is better when shared.

Joseph Carpenter
Send Joseph Email
or use the Call Me widget in the chapter blog:
http://nmvasculitis.blogspot.com/

Additional Educational links and resources available at:
http://www.nmvasculitis.org
(Moving soon - to be incorporated into http://www.vasculitisfoundation.org/

Attend the 2012 Vasculitis Symposium Webinar

 

Attend the 2012 Vasculitis Symposium Webinar  Knowledge. Community. Power. Saturday, April 21, 2012 I am pleased to invite you to attend the 2012 Vasculitis Symposium via webinar.   The webinar will offer some of the sessions from the 2012 Vasculitis Symposium. Please note, you will need to register for each session you want to attend. MORNING SESSION:  8:30 a.m. - 10:00 a.m. CDT  Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/694259583 What Is The "State of the Art" for Treatment of Vasculitis?  Peter A. Merkel, MD, MPH  Division of Rheumatology, University of Pennsylvania  What Does The Future Hold That Is Even Better?  Gary S. Hoffman, MD, MS, Center for Vasculitis Care and Research, Cleveland Clinic  The VCRC Vasculitis Illness Perception (VIP) Study: Illness Perception,  Fatigue, and Function in Systemic Vasculitis  Peter C. Grayson, MD, Boston University Vasculitis Center Title: Morning Session Date: Saturday, April 21, 2012 Time: 8:30 AM - 10:00 AM CDT MORNING BREAKOUT SESSION:  10:30 a.m. - 12:00 p.m. CDT We are offering three breakout sessions. Please choose one session to attend. Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/298475287 Dr. Phillip Seo, The Johns Hopkins Vasculitis Center, and Professor Wolfgang Gross, University of Luebeck, Clinic for Rheumatology, provide an overview of Vasculitis in general, including understanding treatments, tests and procedures, and medications and side effects. Title: Breakout Session 1A: The Newly Diagnosed Patient with Any Form of Vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1B: Small Vessel Vasculitis Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/315413312 Small Vessel Vasculitis [Churg Strauss syndrome, Granulomatosis with polyangiitis (Wegener's) and Microscopic polyangiitis] Title: Breakout Session 1B: Small Vessel Vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1C: Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis   Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/817031297 Dr. Kenneth J. Warrington of the Mayo Clinic discusses Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis. Title: Behcet's, Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and hepatitis-associated vasculitis Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis) Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/942372952 Dr. Antoine G. Sreih of the Rush University Vasculitis Clinic and Dr. Curry L. Koening of the University of Utah discuss Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis). Title: Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis) Date: Saturday, April 21, 2012 Time: 10:30 AM - 12:00 PM CDT AFTERNOON SESSION:  12:45 p.m. - 1:45 p.m. CDT Afternoon Session: What is remission? Space is limited. Reserve your Webinar Seat Now at: https://www4.gotomeeting.com/register/153226191 Hear Dr. Carol A. Langford of the Center for Vasculitis Care and Research discuss what remission means to a vasculitis patient. Title: Afternoon Session: What is remission? Date: Saturday, April 21, 2012 Time: 12:45 PM - 1:45 PM CDT AFTERNOON BREAKOUT SESSION:  2:00 p.m. - 3:00 p.m. Breakout Session 2A: Vasculitis Fall-out   Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/988828185 Dr. Philip Seo of the Johns Hopkins Vasculitis Center explains the fall-out associated with symptoms and treatment of vasculitis. Title: Breakout Session 2A: Vasculitis Fall-out Date: Saturday, April 21, 2012 Time: 2:00 PM - 3:00 PM CDT We hope you will be able to join us. Sincerely, Joyce A. Kullman Executive Director

Are you going to Chicago next week?

As I prepare to go host our chapter meeting today, I think the main thing on my mind is all the hard work taking place to grow the Vasculitis Foundation so that patients everywhere can benefit from improved education awareness and research programs. There are projects going on behind the scenes to improve education services for patients, and bring you into closer contact with other patients to share support.

The Vasculitis Foundation is the number one private fundraising organization for research into better treatments and an eventual cure for these horrible conditions. The more I learn about the Vasculitis Foundation, the more I am determined to help.

You want a cure? Then one of your best bets is Donate to the Vasculitis Foundation.

The best way you can help immediately, is by becoming a member. As your friends and family to become members of the foundation, and then be sure to renew your memberships. Consider contributing again when you can. Almost all funds go towards funding the research. If you like, you can even specify which programs you want your contribution to support.

Learn more about ways to contribute at the Vasculitis Foundation website:https://contribute.vasculitisfoundation.org/getinvolved

The second thing on my mind is the upcoming Vasculitis Foundation Patient Symposium next week in Chicago.

There are actually two main Vasculitis Symposia for patients this year: 

Chicago on April 21.

 Atlanta on July 21.

Check out the Vasculitis Foundation website for more information and to make arrangements to attend.

VF ANNOUNCES LOCATIONS FOR 2012 SYMPOSIA LOCATIONShttp://vasculitisfoundation.org/node/4591

These are outstanding opportunities for new patients especially to learn more about vasculitis, and also to meet other patients face to face. How long have you been struggling with your condition alone. Nobody else really gets it, right? Some people are understanding, but they can only support you. Others wonder when you will get better, as if they do not understand the meaning of the word, "incurable condition."

Vasculitis is very rare, but at the symposia, you have a chance to be among several hundred patients and caregivers with issues very similar to your own. It is a rare opportunity for sufferers of these rare conditions.

The other benefit is getting to attend presentations by some of the world's foremost vasculitis researchers and clinicians. No doctor knows it all, but these people know than most about vasculitis: How to diagnose it, and how to treat it.

When better treatments are developed the Vasculitis Foundation will be right there to report it. When a cure is found, the Vasculitis Foundation will be there to ring that bell and let the world know.

Become a member, and consider attending one or more symposia to get connected and learn more about these conditions.

And if you feel like talking about other ways to gain support and spread awareness locally, come meet me at one of the monthly meetings.

I will be at Deli-Berry on the second Saturday of every month at 3PM. DeliBerry is located at 2520 Juan Tabo Blvd NE, Albuquerque, NM. 

You dont need a reminder from me. Mark your calendars or subscribe to the chapter Google calendar so it updates automatically when I add or update an event.

Hope to see you there.