Relapsing Polychondritis Foundation Inc.

The RP Foundation facilitates awareness and education to improve the quality of life for patients with relapsing polychondritis (RP), a debilitating and sometimes fatal systemic inflammatory disease that is characterized by recurrent inflammation of cartilage and other tissues throughout the body. RP affects multiple organs, particularly cartilaginous structures such as the ears, nose, airways and joints as well as eyes, skin, heart valves and brain. The cause of RP is unknown and there currently is no cure for this disease.

In June 2020, Nancy Linn, Chair of the RP Foundation, was featured on WQBQ Triangle Spotlight. The program was originally broadcast on radio and available worldwide on WQBQ’s website.

Beginning in May 2020, the RP Foundation collaborated with members of a United States based support group to manufacture and distribute cloth masks to protect the international RP community from COVID-19. The RP Foundation donated custom fabric with logos of RP organizations operating internationally. Over 300 one-of-a-kind masks were shipped throughout the United States, Canada, United Kingdom, France, Austria, Romania, Germany, Netherlands, Australia, and New Zealand.

In April 2020, the AHN Autoimmunity Institute featured the RP Foundation in its annual report.

In October 2019, the RP Foundation was the event sponsor of the Friends of Patients at the NIH 2019 Friends’ Night Out, an evening dedicated to the partnership of patients, doctors and researchers to find lifesaving cures. During the event, Francis Collins, MD, PhD, Head of the National Institutes of Health (NIH) said, "For rare diseases, I am glad that we’re talking about relapsing polychondritis. We have some really new insights that are happening. One of our members of the band, Peter Grayson, is part of that effort.” Nancy Linn, founder of Race for RP and Chair of the RP Foundation, delivered a compelling address to a room full of attendees during which she explained that she herself is an NIH research patient. And how the valuable research performed by the NIH had a profound impact on her life and inspired her to work to improve and transform the lives of other patients.

In September 2019, the RP Foundation and the Northern Michigan University's Doctor of Nursing Practice Program hosted a "Symposium Exploring Autoimmune Diseases" and facilitated participation and/or sponsorship by the Allegheny Health Network (AHN) Autoimmunity Institute, and the American Autoimmune Related Diseases Association (AARDA). The event was filled to capacity with upwards of 300 persons in attendance. The RP Foundation also arranged for TV6 and Fox UP to provide television coverage and co-sponsor the event. Kohr Motorsports graciously provided a branded race car supporting autoimmune disease awareness, a show-stopper which received a great deal of attention on the NMU campus and in the homecoming parade which followed. During the symposium attendees listened intently to keynote speakers and leading experts in the field, Dr. Joseph Ahearn followed by Dr. Susan Manzi, as they explained the causes and factors involved in triggering an overactive response of the immune system, current treatments available for autoimmune disorders, and the importance of offering interdisciplinary care for patients suffering from these chronic diseases. Dr. Emily Somers gave an incredibly detailed and thorough presentation on relapsing polychondritis (RP), exploring the pathophysiology of the immune system response in RP, the identification of etiologies, signs and symptoms of RP as well as a review of current and possible treatments of the disease.The final session of the symposium was a panel discussion with the keynote speakers as well as panel guest, Mike Duckwall, RN, FNP-BC. Addressing audience member submissions directly, the holistic question and answer session identified appropriate nursing and medical care for patients with immune disorders focusing on the concerns from patients, nurses and physicians in attendance on the realities of living with autoimmune disorders and the challenges they have faced in diagnosing, understanding and treating these diseases.

In May 2019, the RP Foundation, with outstanding assistance from Dr. Marcela Ferrada of the NIH, created an easy-to-understand, peer-reviewed poster for medical professionals to have a resource to know that her/his patient may have a rare autoimmune disease.