Vasculitis Foundation Awareness Week- 2008

By Cindy Smoot
July, 2008

The Vascul itis Foundation's annual awareness raising event is fast approaching. This year's Vasculitis Awareness Week will be held September 21-27. The VF welcomes your help with this important initiative. Raising awareness leads to earlier diagnoses, more research and better treatment for patients with any type of vasculitis. Following are ways you can help. You could write a letter to your congress person, plan a walk, or ask your city government to publicly acknowledge Vasculitis Awareness Week. You can simply send an email to your friends and family and ask them to make a contribution to the Vasculitis Foundation, or take brochures to your local doctors and ask them to display them in their offices. There are many different activities that you can plan to raise awareness and funds for the VF. The Vasculitis Foundation offers support and guidance for all these events, and can help you plan other events. The VF has media packets to help guide you with contacting your local media and to help prepare you for an article or news interview.

New York City or Chicago area vasculitis patients and families are planning to gather to create a visual presence outside of the Today Show in New York, and the ABC studios in Chicago. The VF would love to have as many people as possible in both locations to represent the Vasculitis Foundation and to raise awareness of these very rare diseases. If you are interested in being in either of these events you may contact the following people for details:

September 21, 2008
ABC News Studio Appearance by
Northern IL Chapter in Support of
Vasculitis Awareness Week
Jennifer Laystrom-Naida 630.830.9383
ffnavywife@comcast.net


September 23, 2008
Today Show Appearance in Support of Vasculitis Awareness Week
New York City , NY
Bob Sahs
aagolf@aol.com


The Vasculitis Foundation website has a calendar of other awareness events. Your help at any of these events would be much appreciated.

The Vasculitis Foundation is the largest and most influential patient advocacy organization representing patients with all forms of vasculitis. While many types of vasculitis are considered rare, Churg Strauss Syndrome is one of the rarest among the vasculitic diseases with a much lower patient population than some of the other diseases. Research dollars are often more available for diseases with the highest patient population. This has always been the problem with getting funding for research for Churg Strauss. The Vasculitis Foundation uses their influence and advocates for Churg Strauss research. They provide grants to doctors for research into vasculitis and serve as a uniting organization for all forms of vasculitis and use the collective numbers of all patients they represent to help garner more support, funding, awareness and research. The Churg Strauss Association is very indebted to the Vasculitis Foundation for their willingness to represent those of us affected by Churg Strauss. Partnering with them allows us to accomplish more on behalf of CSS patients. So we all have a very good reason to show our thanks and lend support to the Vasculitis Foundation.

If you are interested in planning an event, please contact Jordan Crane, VF Director of Development, for information and support.