Editor’s note: In September 2009, Katie, a Wegener’s patient won the “The Beautiful Love Stories Contest” sponsored by Estee Lauder for the Wedding Channel. The following is her submission for the contest.

There were so many things said to me in the days that followed my father’s death. One in particular, will stay with me forever.

Cindy Abbott, a faculty member at Cal State Fullerton, successfully summited Mt. Everest, the highest mountain in the world, on May 24th.

Cindy was diagnosed with Wegener's granulomatosis in 2007 and lost sight in her left eye. She began the climb on April 1st and throughout her training, raised awareness of Wegener's vasculitis and rare diseases in general through her personal blog and numerous online, TV, radio and newspaper interviews.

Click here to read her complete story.

In an attempt to raise awareness about vasculitis, 12 VF supporters from the NY metropolitan area, wearing VF shirts, displayed signs and a VF banner outside NBC studios in Rockefeller Center with hopes of being seen and heard on national TV. This was their 5th year attempt.

A potential therapeutic target for autoimmune vasculitis has been identified by researchers of the Franz Volhard Clinic for Cardiovascular. Diseases (FVK) of the Charité - University Medicine Berlin/HELIOS- Klinikum and the Max Delbrück Center for Molecular Medicine (MDC) Berlin-Buch. They discovered that a specific surface receptor (NB1) mediates the expression of a molecule (autoantigen) on the surface of certain white blood cells, where the immune system recognizes and binds it. This reaction starts the inflammation process.

The 14th International Vasculitis & ANCA Workshop was held June 6-9 in Lund, Sweden and Copenhagen, Denmark prior to the EULAR meeting. The ANCA Workshop brought together researchers from around the world to discuss current vasculitis research efforts. The VF provided a $5,000 grant in support of the meeting. Joyce Kullman, VF Executive Director and Jane Dion, director of the Churg Strauss Syndrome Association attended the meeting.

The Vasculitis Clinical Research Consortium (VCRC) is extremely pleased to report that our grant application for renewal of support for the Consortium was successfully refunded for another five year period by the National Institutes of Health, specifically the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Dr. Peter Merkel, of Boston University School of Medicine, is the Principal Investigator for the VCRC, along with Co-Investigators from the Cleveland Clinic, Johns Hopkins, the Mayo Clinic, and Mount Sinai and St. Joseph’s Hospitals in Toronto.

Rituximab offers the same benefits as cyclophosphamide in the treatment of vasculitis, according to research presented on Sunday, Oct. 18, 2009 at the American College of Rheumatology Annual Scientific Meeting in Philadelphia, Pennsylvania. Vasculitis refers to inflammation of blood vessels. There are multiple types of vasculitis. Most types of vasculitis are rare, their causes are generally unknown, and treatment is challenging. ANCA-associated vasculitis is caused by an overreaction of the immune system to many organ systems of the body (a systemic autoimmune disease). There are several types of ANCA-associated vasculitis, including Wegener’s granulomatosis, microscopic polyangiitis, and Churg-Strauss syndrome. Combined use of cyclophosphamide and glucocorticoids has been the standard of care for induction of remission of ANCA-associated vasculitis for decades. Some studies have suggested that rituximab (Rituxan®) may be an effective alternative to cyclophosphamide for treating the disease while avoiding some of the side effects, such as low white blood counts, infections, irritation of the bladder, infertility and others caused by the standard therapy. Researchers recently set out to compare the effectiveness of rituximab to cyclophosphamide in 197 patients with severe Wegener’s granulomatosis or microscopic polyangiitis. They divided the participants into two groups; 99 participants on rituximab, of which 85 percent completed the study; and 98 participants on cyclophosphamide, of which 83 percent completed the study. The goal was to get each participant into remission and off prednisone. Researchers found that 64 percent of the participants on rituximab experienced disease remission, compared to 55 percent of participants on the combination therapy. In addition, 71 percent of patients taking rituximab dropped their BVAS/WG (a composite measure of vasculitis disease activity) to zero and their prednisone (steroid) medication down to under 10 mg/day. This only occurred in 62 percent of the patients in the cyclophosphamide treatment group. It was also noted that there were no differences between the two groups regarding the rates of disease flares and renal treatment response. Additionally, the rates of side effects were similar among the two groups, but fewer patients in the rituximab group experienced one or more selected severe side effects. “This study proves that for patients with severe ANCA-associated vasculitis (Wegener’s granulomatosis and microscopic polyangiitis) there is finally an effective and well tolerated alternative to cyclophosphamide,” explains Ulrich Specks, MD; Mayo Clinic, Rochester, Minn., and lead investigator in the study. Patients should talk to their rheumatologists to determine their best course of treatment. The ACR is an organization of and for physicians, health professionals, and scientists that advances rheumatology through programs of education, research, advocacy and practice support that foster excellence in the care of people with or at risk for arthritis and rheumatic and musculoskeletal diseases. Reprinted with permission from American College of Rheumatology http://www.rheumatology.org/press/2009/2009_am_22.asp

The Vasculitis Foundation has long raised awareness in the medical community in the USA by setting up informational booths at medical conferences. This year marks the first year that the VF exhibited at an international medical conference in Europe. Joyce Kullman, VF Executive Director and Jane Dion, Director of Churg Strauss Syndrome Association and VF Education and Awareness Council member, manned a booth at the EULAR conference in Copenhagen, Denmark from June 10 to June 13. The European League Against Rheumatism (EULAR) is the organization which represents the patient, health professional and scientific societies of rheumatology of all the European nations.The EULAR conference, held annually since 2000, has become the primary platform for the exchange of scientific and clinical information in Europe. This year more than 13,500 delegates from 117 different countries registered at EULAR. Exhibiting at medical conventions is an important part of raising awareness of rare vasculitic diseases. In addition, they help to raise the profile of the VF and the services it provides to patients worldwide. The VF booth was visited by physicians from all of Europe as well as from Morocco, South Africa, Jordan, Bulgaria, India and many, many other countries too numerous to list. Many doctors asked for information for patients as none was available in their countries. Others were interested in the lists of research articles contained in the medical awareness folders. The VF brochures with disease specific inserts were also extremely popular. The VF, a worldwide organization, was very successful in raising awareness at EULAR. This may lead to earlier diagnosis, better care and more support for vasculitis patients around the globe.

If you are part of an online social network, please add the VF as your “Cause”. By adding the VF as your cause, you are able to raise funds through your personal network page and you raise awareness, as each person who joins your page will learn about the VF. If you are part of an online social network and would like more information on how to add VF as your cause, contact Joyce Kullman at jakullman@vasculitisfoundation.org

The VF Annual Membership Meeting will be held during the 2010 All Star Vasculitis Symposium in Long Beach, California.

An election for the VF Board of Members will be held during the meeting. Members of the VF and interested parties are encouraged to run for the Board.

The VF is committed to broadening and expanding the knowledge, expertise and interests of the Board. We are looking especially for expertise in finance, technology/website, e-communication, law and fundraising but also need indivduals who can help with other matters. This is a working board, so we ask people who are interested to take the potential of a board position very seriously. The Board meets quarterly; two meetings are held in person, two meetings via conference call. The Board holds additional conference calls as needed.

If you are interested in applying for the Board, please contact Joyce Kullman, VF Executive Director, jakullman@vasculitisfoundation.org for an application. The application deadline is Friday, June 11, 2010. .