A Symposium Review, from an attendee's view!
by Christine M. Carroll
Newington, Connecticut
The 2010 All Star Vasculitis Symposium, held July 30 - August 1, in Long Beach, California, was a tremendous success. With over 300 attendees, 30 speakers and 36 general and breakout sessions, the 2 1/2 day meeting brought together the “All Stars” of the vasculitis world - our patients, family members and vasculitis experts.
All Stars!
Throughout the meeting, special “All Stars” were honored for their efforts to forward the VF’s mission to support and empower patients through education, awareness and research.
All Stars included awareness and fundraising event organizers, international support group leaders, donors, and researchers studying vasculitis. The youngest honoree is 8 years old; the oldest in her 80s.
Allison and Meng-ChiehThree remarkable vasculitis patients were introduced separately. Allison Lint, a classical violinist and student at the Oberlin Music Academy, performed on Friday evening.
After Saturday’s banquet, the attendees were introduced to professional concert pianist, Meng-Chieh Lui, and a videotape of his performance was viewed. Lui suffered from paralysis at the time of his vasculitis diagnosis and has fought his way back to performing as a professional.
Cindy AbbottOn Sunday, Cindy Abbott was introduced. Cindy, a Wegener’s patient who is blind in one eye, climbed Mount Everest on May 23, 2010, at the age of 51. Cindy gave the motivational talk on Sunday, “Reaching Beyond the Clouds!” and encouraged attendees to fight for their dreams and to not let vasculitis stop them from living the life they want to live.
Symposium speakers 2010Many thanks to the speakers who donated their weekends to make the symposium a success!
Friday's sessions
The Symposium kicked off on Friday afternoon with "Round Table Discussions" for individual disease groups and a special “Young Adults” session. Moderators guided the discussions around a list of famous quotes including "Oh the places you’ll go, Laughter is the best medicine, and Knowledge is power, community is strength and positive attitude is everything."
Attendees were given the option to wear different-colored buttons indicating their specific vasculitis (i.e. Churg Strauss Syndrome, Polyarteritis nodosa, Behcet’s, etc.) for quick identification with other patients and family members dealing with the same disease.
After an afternoon break, the Vasculitis 101 session provided an overview of vasculitis. Dr. Peter Merkel, Boston University Vasculitis Center, discussed how the various types of vasculitis relate to each other, and their common features.
Dr. Luis Felipe Flores-Suarez, Instituto Nacional de Enfermedades Respiratorias, presented information on Microscopic polyangiitis, Churg Strauss syndrome and Wegener’s granulomatosis.
Dr. Cornelia Weyand, Division of Rheumatology, Stanford University, talked about those vasculitides that affect the large blood vessels of the central nervous system: Giant cell arteritis, Polymyalgia rheumatica, and Takayasu’s arteritis.
Dr. Phil Seo, The Johns Hopkins University Vasculitis Center, reviewed the remaining vasculitides: Behcet’s, Cryoglobulinemia, Henoch-Schönlein purpura, Polyarteritis nodosa, and secondary forms of vasculitis.
Also on Friday afternoon, Dr. Sara Stern, Dept. of Rheumatology, Childrens Hospital Los Angeles, hosted a Pediatrics session for our younger patients and their parents. Dr. Stern discussed diagnosis and treatment options and addressed some of the special concerns that our pediatric patients face.
Gary S. Hoffman, MD, MSOn Friday evening the group gathered for a Dessert Reception. Dr. Gary S. Hoffman, former director of the Cleveland Clinic Center for Vasculitis Care and Research, gave the keynote address “Vasculitis: Where We’ve been, Where We’re Headed.” Dr. Hoffman discussed the history of vasculitis and its treatment, starting from the 1890’s when the types of vasculitis began to be described from postmortem examinations. Until the 1970s, there was no effective treatment for vasculitis.
At this time, vasculitis was treated with glucocorticoids and chemotherapeutic drugs, such as cyclophosphamide, Azathioprine, methotrexate, and chlorambucil. The results were positive, although these medications were toxic to patients. Since the 1980s, vasculitis research has mushroomed. Researchers throughout the world are studying the immunologic defects that are responsible for the development of vasculitis, and are performing clinical drug trials in order to identify less toxic treatments for vasculitis.
Saturday's sessions
After the first general session on Saturday morning, attendees broke into two groups, one for small vessel vasculitis, and one for large vessel vasculitis. In both groups, physicians discussed the standard therapy and chronic symptoms for small and large vessel vasculitis. For the remainder of the day, attendees participated in smaller, breakout sessions focusing on specific issues in vasculitis, as well as patient psychosocial issues. The format of these sessions was a brief presentation by the physician leader, followed by questions and answers. Topics included assembling your medical records, caregivers support, stress management,ear/nose/throat concerns, pediatrics, pharmacology, cardiology in vasculitis, gastrointestinal issues, the kidneys in vasculitis, and lung issues for the vasculitis patient. On Saturday evening, attendees gathered for the “All Star Recognition and Celebration Banquet” and walked the red carpet, posing for photos with Elvis, Marilyn Monroe and the stars of Twilight.
Jane and SteveAfter dinner, area contacts, chapter leaders, event organizers, volunteers and board members were recognized for their efforts in helping the VF. Jane Dion, founder of the Churg Strauss Syndrome Association, was presented the Bruce Macdonald Volunteer Spirit Award in honor of her efforts to improve the lives of Churg Strauss and vasculitis patients around the world.
Christy Abele, Chair of the Medical Awareness Committee, introduced the first VF Research Report and the report was handed out to the attendees.
Steve Madincea then introduced Meng- Chieh Liu and he shared his story and his performance tape was played.
Sunday's sessions
The symposium continued on Sunday, with the VF annual membership meeting being conducted during breakfast. Bob Sahs, VF President, provided an overview of the VF’s activities over the past year. Steve Madincea, Treasurer, presented the VF’s financial records. The membership then elected Steve Madincea and Dr. Gary S. Hoffman to the Board of Directors to serve three-year terms.
Sunday’s first general session included the presentations “Understanding Lab Results” by Dr. Patrick Nachman, UNC Kidney Center; “Reproductive Health Issues for Women and Men” by Dr. Megan Clowse, Rheumatology Division, Duke University and “Getting Involved in Vasculitis Patient Advocacy” by Jane Dion, Cassie Keane and Cindy Webber, VF members.
The second general session included the presentations "Vasculitis Medication Review (dosing/toxicities)" by Dr. Kenneth Warrington, Division of Rheumatology, Mayo Clinic; “Peripheral Neuropathy” by Dr. Annabel Wang, Neurology Department, University of California-Irvine; Dr. Nabih Abdou, Center for Rheumatic Disease on “Vasculitis: Possible Mechanisms: the Role of Autoimmunity” and “Disability and Workplace Issues for Vasculitis Patients” by Essie Landry, Social Security Administration.
The group gathered again for the final session of the symposium. Cindy Abbott, a Wegener’s patient, shared her story of climbing Mt. Everest in her motivational talk “Reaching Beyond the Clouds!”
In a final farewell, Bob Sahs offered thanks and well-wishes to all the attendees and expressed the VF’s thanks to all the speakers who donated their time.
