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When the RP Foundation was established, there was little to no awareness about relapsing polychondritis. Some of the most recent scientific articles dated to the early 20th century. We focused our early efforts on building relationships and raising awareness for RP and other autoimmune diseases primarily through our successful Race for RP campaign. With that solid foundation, we’re now able to focus on educating the public and the medical community while raising over half a million dollars for research.
We launched the new Race for RP Website. The RP Foundation designed and implemented a new, highly engaging website that drives awareness and support for our Foundation to facilitate research and studies that help diagnose, treat, prevent and potentially cure RP and related diseases.
The RP Foundation invested in the next phase of VEXAS research that’s searching for additional genetic mutations in patients with autoimmune diseases and is being conducted by a collaborative network of talented researchers in the Inflammatory Disease Genetics Program at NYU Langone and the Relapsing Polychondritis and Autoinflammatory Clinics at the National Institutes of Health (NIH).
We launched our new RP Foundation Website. The RP Foundation designed and implemented a new, highly engaging website to increase awareness regarding the bold, purposeful research we’re investing in.
The Foundation supported the “Friends of Patients at NIH RP Fund” which is administered by the NIH and provides funding for travel and lodging to eligible patients traveling to the NIH for treatment.
The Foundation supported the “Friends of Patients at NIH RP Fund” which is administered by the NIH and provides funding for travel and lodging to eligible patients traveling to the NIH for treatment.
RP Warrior, Dan Smith, organized the inaugural RP Warrior 5k Walk. Twenty-five teams from around the world raised over $26,000 for RP research!
VEXAS acknowledged to ICC and WHO classification systems for hematological cancers. This is a very important step towards advancing global awareness and expediting the diagnosis of VEXAS and related autoimmune diseases
We launched the Relapsing Polychondritis Foundation YouTube channel so we can share video updates from researchers, doctors, patients and supporters who help give patients with RP hope.
The Race for RP partnered with Podium eSports and Monday Night Racing to launch the inaugural eRace for RP. The sim eRace raised $401,000 to support RP and related autoimmune research!
We partnered with Race for RP to launch Full Throttle, a new show that features our collaborative research projects made possible by the support of our Motorsports partners.
Invested in potentially ground-breaking collaborative research at The University of Texas MD Anderson Cancer Center and NYU Grossman School of Medicine to search for genetic markers in patients with RP-related autoimmune disease and bone marrow diseases.
Provided additional support to researchers at NYU Langone to build upon the VEXAS research and support the expanded genetic mutational analyses of patients with autoimmune disease.
RP patients and advocates presented patient-perspective posters at the annual Rare Disease Day at the NIH event.
The discovery of VEXAS syndrome was deemed “the year’s best discovery” by the American Society of Hematology.
As a component of the Penn RP Program, the RP Foundation supported a study conducted by Dr. Banerjee and scientists at the NIH describing the nasal manifestations of RP. Results from this study were presented at the American College of Rheumatology’s Annual Meeting and VCRC Vasculitis Investigators Meeting to facilitate pathways for more efficient patient care.
Singer, songwriter, and producer Denise Stefanie announced the release of her new single, “All In,” in support of Race for RP and the Relapsing Polychondritis Foundation (RP Foundation).
With the support of the RP Foundation, the University of Pennsylvania and the Vasculitis Clinical Research Consortium (VCRC) launched an RP-focused Longitudinal Study and Biobank, and the first patient with RP was enrolled in the study.
Partnered with the University of Pennsylvania and provided funding to launch the nation’s only RP-focused medical center. The Penn RP Center provides patients with access to a dedicated team of multi-disciplinary specialties.
The Relapsing Polychondritis Awareness and Support Foundation, Inc. adopted a new name and became known as the RP Foundation.
Revitalized the Relapsing Polychondritis Awareness and Support Foundation to help ensure its success by: adding new leadership to the Board of Directors and increasing financial resources to improve the Foundation’s effectiveness.
The Relapsing Polychondritis Foundation’s mission is to facilitate awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP) and advance a cure for this disease.
We believe rare diseases don’t have to be incurable diseases and the best way to support patients is to build strong relationships. We have a shared vision to improve awareness of relapsing polychondritis and autoimmune diseases in general, catalyze new research efforts, improve diagnosis and treatment, and connect patients and their families with the support and resources they need.
Members of the RP Foundation Board of Directors have a diverse range of experience in government, healthcare, nonprofit fundraising, and private sector corporations across multiple disciplines. Many of us also have personal experiences with RP or other autoimmune diseases.
Nancy Linn is a research advocate and philanthropist. In 2011, she was diagnosed with relapsing polychondritis. Nancy produced RP: The Ride of My Life, a documentary about her battle with relapsing polychondritis, to advance research in pursuit of treatments and cures for this and other autoimmune diseases.
Michael Linn has over 25 years of operational, transaction and start-up experience in the investment management business. Since 2015, Michael has been an advocate for autoimmune disease awareness and research.
Dave has 30 years of experience in public and private sector development, including fund development, philanthropic donor research, marketing and recruitment, and grant writing. He has a proven record of engaging donors to advance research and designing educational and advocacy experiences to connect researchers with various communities.
Mr. DeRosa is a Mobility Lead at AECOM with over ten years of experience in both public and private sectors, as well as non-profit. He is based in Los Angeles and his recent experience has focused on delivery of transportation projects including Connected and Autonomous Vehicles, Hyperloop, High-Speed Rail, Light-Rail, and Streetcars.
Fran Sweeney has over 35 years of experience in the financial markets. She is an advocate and volunteer for several community-based programs and nonprofit organizations in the Los Angeles area and an early supporter of the Relapsing Polychondritis Foundation.
Race for RP is a partnership with race car drivers, teams, owners, sponsors, and enthusiasts to drive awareness and accelerate research for relapsing polychondritis and other autoimmune diseases. Whether you’re a professional driver, amateur racer, or a weekend warrior passionate about racing, connect with us to learn how you can Race for RP.
Through the synergy of our partnerships, we’re reimagining RP-centered research and patient care. We’re always looking for innovative partners and targeted collaborative opportunities that drive real results for patients and families living with RP and other autoimmune diseases.
A few years ago, there were few options and even fewer resources for patients living with RP. We’re working every day to unlock the mysteries of RP and deliver hope to patients and their families.