The Relapsing Polychondritis Awareness and Support Foundation Inc. (RPASF) mission is to support research to find a cure for a painful and chronic autoimmune disease that few physicians have heard of – and since July, with its newly elected members, the board of directors has gone all-out to give sufferers hope with a whirlwind of initiatives.
New York, NY – September 10, 2018 – The modern age has introduced some miraculous leaps in medicine for many conditions – but for others, they remain virtually unknown except to their sufferers, who may not even receive a diagnosis.
For the board of directors at RPASF, a 501(c)(3) non-profit, this is something that must be remedied – and the foundation is now driving its resources into increasing awareness about relapsing polychondritis and finding a cure, including interdisciplinary collaborations and events with major players in the autoimmune disease community.
The most recent event, Grapes on the Green, took place on August 24 and raised an impressive $500,000 for the Benaroya Research Institute at Virginia Mason (BRI), a world-class autoimmune disease research center in Seattle, WA. RPASF, together with Race for RP and Ferrari of Seattle, displayed a Ferrari 488 Spider (pictured) and donated a hot lap experience that was successfully auctioned to raise $5,000.
“Autoimmune diseases – such as relapsing polychondritis – happen when your immune system mistakenly attacks the body, rather than the foreign invaders it should. We don’t yet know what causes this misfire – which is what makes it so tough to diagnose and treat,” explained Dr. Jane H. Buckner, President of BRI.
“The path to a cure is not going to be easy – but events like this can help to further research and progress against relapsing polychondritis and other autoimmune diseases. Each donation, each event, and each laboratory breakthrough is progress not just for those suffering from relapsing polychondritis, but for sufferers of all autoimmune disorders.”
Relapsing polychondritis is a painful, sometimes fatal, autoimmune disease that attacks the body’s cartilage (primarily found in the ears, eyes, nose, joints, and respiratory system), causing deterioration with painful episodes of inflammation.
While sufferers outwardly look ‘normal,’ they must carefully manage their life to minimize the impact that the disease has on them. With just 3-5 people affected per million, many doctors are unfamiliar with it – and its lack of a specific test means diagnosis and treatment is further complicated.
The next major event on RPASF’s calendar is a relapsing polychondritis reception in Chicago on October 20 at the Chicago Firehouse Restaurant. This invitation-only event is being hosted and sponsored by RPASF, Race for RP, the Allegheny Health Network (AHN) Autoimmunity Institute, and the American Autoimmune Related Diseases Association (AARDA).
“Relapsing polychondritis is a disease that few people know about; if we want to help people suffering and offer them better treatment outcomes and a better life, we need to understand more about it,” said Nancy Linn, Chair of RPASF. “Our mission is to push forward this research and raise awareness of this terrible condition so that those suffering can get the treatment that they deserve.”
On August 3, the foundation reported that a $50,000 donation from RPASF directors and officers was made to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) that supports patient-related travel to the National Institutes of Health (NIH) as well as intramural research.
The news follows on from RPASF’s recent board of directors’ election in July, which saw four new members of RPASF take their seats. At the time, the foundation pledged to grow and attract key talent to further much-needed research into relapsing polychondritis.
The new directors are Nancy Linn as Chair, Michael Linn as Vice Chair, David Bammert as President, and David DeRosa as Secretary. For more information about relapsing polychondritis and to support the RPASF, please visit www.polychondritis.org/about-rpasf/
