Once the Wegener’s Granulomatosis Association- now the Vasculitis Foundation

What this change means for CSS patients

The Wegener’s Granulomatosis Association, founded in 1986, is now the Vasculitis Foundation and provides support, education and other resources for 15 different diseases, including Churg Strauss Syndrome. The name change was made at the beginning of 2006 after a membership vote. The VF has been working throughout the first half of the year to support its new mission and develop resources for all the vasculitic diseases.

The Churg Strauss Syndrome Association enthusiastically applauds this initiative. Vasculitis itself is a very rare condition, and Churg Strauss Syndrome and some of the other vasculitides are rarer still. Smaller organizations working alone find it difficult to make an impact in the patient advocacy world. Although the CSSA provides many valuable services, it has been unable to fund research, sponsor symposiums or mount awareness raising campaigns - all things that the VF has been doing well for years. In joining the VF, CSS patients will support and benefit from their many services. In no way does the VF detract from the work of the CSSA. Rather, the two organizations have been working together closely to ensure that the needs of CSS patients are met. Jane Dion, of the CSSA, has joined the VF Board of Directors and Cindy Smoot serves on the newly created Awareness and Education Council. Although there is some overlap of information and services, in general the two organizations complement each other extremely well.

Why CSS patients should join the Vasculitis Foundation

The VF is the largest, most highly respected international vasculitis patient support group in the world. The VF offers services and support to all vasculitis patients and their families. In addition, the VF works closely with the research community and effectively promotes research in vasculitis.

The VF provides the following support and services:

a) A responsive and friendly professional staff easily reached by a toll free number or by e-mail.

b) A dedicated and hard working Board of Directors

c) Publication of a bimonthly 20-page newsletter providing the most current information on vasculitis, treatments, research and updates on the VF’s activities. This informative newsletter is mailed directly to member’s homes. In an effort to familiarize prospective CSS members with the VF , this newsletter is being offered free of charge to CSSA members until the end of the year. To receive your free copy call the VF office at 1-800-277-9474, or contact them by e-mail at (vf@vasculitisfoundation.org)

c) A network of support groups from around the world. These groups meet several times a year to discuss medical and research updates and to offer comfort and support to each other. Since CSS is such a rare form of vasculitis, support groups solely for CSS have not been established. This is a wonderful opportunity to meet with others in your area who have some form of vasculitis.

d) Patient packets. The VF maintains a library of reference materials on vasculitis and provides information on the diseases, treatments, medications and coping mechanisms for patients, family members and medical professionals.

e) Biennial International Symposium. The VF sponsors educational conferences for patients and family members every other year. Speakers include the top medical experts treating and researching vasculitis. The meetings provide forums for medical and scientific discussion and an opportunity to meet other patients with vasculitis and family members. This year over twenty five CSS patients and their family members attended the Symposium.

f) Availability of Symposium tapes for purchase for those unable to attend the event.

The VF has effectively advanced research into vasculitis in the following ways:

a) Established the VF Grant Program which provides seed grants to support pilot studies in researching etiology, epidemiology, diagnosis and treatment, including approaches that would prevent complications, and development of coping skills for living with this disease.

b) Sponsoring of a consensus conference.

c) Establishment of a stellar medical advisory board. The VF Medical Consultants consist of esteemed experts in the disease from around the world. VF Medical Consultants provide free consultation to physicians who treat patients with vasculitis. These dedicated and involved professionals participate in the symposium, write medical articles for the VF newsletter, and partner with the VF to provide information about vasculitis research and trials.

Public Awareness campaigns:
Many vascultis patients go undiagnosed for months or years after developing symptoms. The VF works to raise awareness of the disease through television and newspaper interviews, public service announcements, press releases, hosting awareness events and speaking at local community, religious and civic organizations. For those wishing to learn how to plan and sponsor an event , the VF has a packet of information which provides step by step information.

How to Join
Dues and donations are the VF’s largest sources of underwriting for these valuable services. To join, please visit the membership page of the website.

If you are a patient and cannot afford to pay dues, the VF will waive payment, because they feel it is essential that all patients have access to the latest information on vasculitis.

Membership dues are $25 USD a year for USA residents and $30 USD for people living in other countries.

Dr. Gary S. Hoffman encourages vasculitis patients to unite under one organization

Dr. Gary S. Hoffman is one of the world’s leading experts in vasculitis. He is the former Director of Vasculitis and Related Disease Research at the National Institutes of Health and is the chairman of the Cleveland Clinic Department of Rheumatic and Immunologic Diseases. In addition, he is the founder of the International Network for the Study of Systemic Vasculitides (INSSYS). In spite of his many responsibilities related to these positions, Dr. Hoffman has always taken the time to support patient advocacy groups, including both the CSSA and the VF. This is an excerpt from a letter sent to WG members explicating the need for all vasculitis patients to unite under one organization.

“...Does the notion of economy of scale apply to vasculitis? You bet! Can 12-13,000 American patients with WG influence government funding agencies and philanthropies to provide the 10s or 100s of millions of dollars necessary to solve the WG mystery? It has not happened so far. Is it more likely that such funding sources will respond to a lobby of 2 million vasculitis patients and their doctor advocates who appreciate the features common to these diseases, the burden of disease for patients, the resultant impact from disability, family dynamics and effects on national health care costs? It is really quite simple. All vasculitis patients need to band together, to advocate for each other, to petition for better care, more wide-spread training of doctors who should be able to recognize and treat their diseases in a timely fashion, using state of the art diagnostic tests and therapies, and funds for patient education and research. “

Vasculitis in its many forms:

Behcet’s syndrome
Buerger’s disease
Central Nervous System
Churg Strauss syndrome
Cryobulinemia
Giant cell arteritis
Henoch-Schönlein purpura
Hypersensitivity vasculitis
Kawasaki disease
Microscopic polyangiitis
Polyarteritis rheumatica
Rheumatoid vasculitis
Takayasu’s arteritis
Wegener’s granulomatosis

Written by:
Jane Dion, Co-Director
Churg Strauss Snydrome Association
413-862-4711
September, 2006