Relapsing Polychondritis Awareness

“The form 990 is provided to the board which is reviewed and discussed at a meeting.”

“Policy is emailed, signed by members and retained by treasurer. This is done annually.”

“An informal market survey regarding pay rates and responsibilities for equivalent director positions in similar non-profit organizations was performed. The responsibilities/accomplishments of the current contractual director/president was reviewed. Compensation was based on the board discussion and market survey.”

“See response to 15a. There are no other employees.”

“Also available on www.guidestar.org”

“Governing documents are available on request.”

“The rp foundation's mission is to: (a) increase awareness about relapsing polychondritis; (b) provide support (primarily through the use of the internet, social media, and patient advocacy programs) for those who are affected by relapsing polychondritis, support research to advance a cure for relapsing polychondritis; (c) promote quality care for relapsing polychondritis patients; and (d) engage in such other activities in connection therewith that the board of directors may authorize, in all cases subject to the provision of section 501(c)(3) of the internal revenu code of 1986, as amended, or the corresponding provisions of any subsequent federal tax law (the "code").”

“Awareness: the rp foundation amplified its mission to the broader community through strategic partnerships, including collaboration with race for rp and six international motorsports teams. This included the creation of the award- winning "race of our lives documentary" in 2023. The documentary, a sequel to the 2018 "ride of my life" film, received multiple accolades in fy25, including best documentary feature at the los angeles movie awards and the socal film awards. Focused on a patient's journey with relapsing polychondritis, the film was praised for its powerful storytelling. Concurrently, the foundation significantly increased awareness and support for its innovative rp and autoimmune research through robust digital communications, utilizing platforms like youtube, enewsletter, and social media channels (x, facebook, and instagram). These efforts resulted in substantial follower growth across all social media platforms.”

“Research: the rp foundation's commitment to advancing research in relapsing polychondritis (rp) and related autoimmune diseases yielded significant progress in fy25. Through the foundation's ongoing financial support, the penn medicine rp program not only provided highly individualized, multidisciplinary care to rp patients but also significantly expanded its research infrastructure. The program's collaboration with the vasculitis clinical research consortium (vcrc) longitudinal study proved vital in growing both its clinical and research endeavors. Key research activities in fy25 included: "the nasal microbiome in anca associated vasculitis and relapsing polychondritis (nmb) study. "the prospect clinical trial (nct06941376) - a pilot study examining immunomodulatory medications for rp. A major development in fy25 was the establishment of the redefining autoimmune diseases across rheumatology (radar) rp program, focused on characterizing autoimmunity in rp patients. This program holds the promise of accelerating diagnoses, tailoring treatments, and developing innovative targeted immunotherapies for rp by identifying critical inflammatory cells and serum markers. Further underscoring its dedication, the rp foundation invested in an rp fellow at penn medicine to further specialized rp research, ultimately aiming to cultivate an ro1-level relapsing polychondritis researcher. The rp foundation played a crucial role in the successful launch and continued growth of the purpose biobank at allegheny health network, which began in 2024. In fiscal year 2025 alone, the biobank welcomed 106 participants from 24 states and puerto rico, including 66 patients with rp. This led to the collection of 88 blood samples, which are now stored for vital future research into rp and related autoimmune diseases.”

“Education: the rp foundation and race for rp are inspired by the courage and resilience of individuals with relapsing polychondritis (rp). Through a rapidly expanding network of patients, donors, and researchers, unique opportunities are created to advance discoveries in rp and related autoimmune diseases. In fy25, the penn division of rheumatology and rp program, with rp foundation support, held an educational meeting for rp patients and their families, facilitating community building, expert interaction, and learning about rp. The rp foundation highlighted its rp- focused research investments and penn collaboration at this meeting in october 2024. Furthermore, the penn vasculitis center / penn rp program, with support from the rp foundation and other partners, hosted dr. Roger yang, a vasculitis foundation fellow. Dr. Yang provided patient care and was instrumental in contributing to the vcrc's database regarding the clinical characteristics of rp and treatment approaches. He intends to open a new academic vasculitis center in montreal, where he will continue to care for rp patients.”

“Fundraising in fy25, the relapsing polychondritis (rp) foundation's dedication to advancing research was underscored by a series of successful fundraising initiatives and the achievement of guidestar's platinum seal of transparency. These efforts directly fuel breakthroughs in rp and related autoimmune disease research. Highlights of fundraising in fy25 include: -growing the community through annual giving tuesday and end-of-year appeals -rp warrior 5k walk: this global, patient-led event mobilized individuals to support vital relapsing polychondritis research. -exclusive 2025 vip race weekend at the indianapolis 500: this event, thanks to rp foundation partners kevin lee and james hinchcliffe, provided unforgettable experiences for attendees while raising significant funds for rp-related autoimmune disease research. Vip access to events like the legends day drivers meeting and pre-race rehearsal, along with a vip garage tour and autograph session, enhanced the experience. A carb night happy hour with james hinchcliff and friends further contributed to the stop and go foundation, the relapsing polychondritis foundation, and autoimmune disease research. -mclaren trophy vip experience competition: this partnership with mclaren provided a unique way for employees to support rp research through donations and a chance to acquire exclusive race day tickets. These accomplishments reflect the rp foundation's tangible impact in all areas of its purpose. Gratitude is extended to the clinical research partners for their continuous efforts in driving discoveries and advancements in rp and related autoimmune diseases. With continued support, the rp foundation remains committed to being a source of hope and a driving force for research that will ultimately lead to effective treatments and a cure for rp.”