Relapsing Polychondritis Awareness and Support Foundation

“Michael linn nancy linn vice chair chair siblings”

“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 relapsing polychondritis foundation (rp foundation) partnered with race for rp and six internationally recognized motorsports teams to generate brand awareness and promote our purpose to the broader community. In 2023, the rp foundation created the race of our lives documentary as a sequel to the ride of my life documentary that was released in 2018. The race of our lives documentary continues to increase awareness regarding rp and highlights the discoveries and advancements that our talented research partners are generating. The race of our lives documentary features a new musical composition, "i will fight," written and produced by singer, denise stefanie. The new documentary won numerous awards at local film festivals and was featured in the april / may edition of southbay magazine. The rp foundation continued to increase awareness and support for the innovative rp and autoimmune research that we're investing in via our youtube channel, enewsletter and social media channels (x, facebook and instagram).”

“Research: while rp continued to be a significant scientific and medical challenge, the talented research partners that the rp foundation invested in continued to drive rp and related autoimmune diseases to the forefront of ground- breaking discoveries. The foundation continued to support research conducted at the university of texas md anderson cancer center and nyu grossman school of medicine that is searching for genetic markers in patients with rp-related autoimmune disease and bone marrow diseases. In fy2024, this research initiative established a comprehensive database of subjects with blood cancers and autoimmune diseases, including rp. It also developed a screening procedure for uba1 mutations in patients who potentially have autoimmune disease. The goal of this research is to potentially facilitate the early diagnosis and management of patients who have this mutation. The foundation invested in the next phase of vexas research being conducted in the inflammatory disease genetics program at nyu langone and the relapsing polychondritis and autoinflammatory clinics at the national institutes of health (nih). Researchers advanced scientific knowledge regarding the genetic changes associated with inflammation in patients with vexas syndrome and established an nyu vexas patient clinic with a rheumatologist, with plans to develop clinical trials for vexas syndrome and related autoimmune diseases. The rp foundation supported purpose biobank at allegheny health network which launched in 2024 to create a centralized, state-of-the-art collection of clinical and research data so researchers can advance our collective understanding of relapsing polychondritis and related autoimmune diseases. In fy 24, the penn medicine relapsing polychondritis program that the rp foundation provided seed funding to launch is becoming a valuable resource and clinical destination for patients with rp, with over 200 patient visits each year. The penn medicine relapsing polychondritis program grew its clinical arm as part of the penn vasculitis center and expanded the research program through the vasculitis clinical research consortium (vcrc) longitudinal study of relapsing polychondritis (rp). Researchers analyzed data from nearly 200 patients in the vcrc longitudinal study of rp focusing on the clinical presentations of patients with rp and the medications used to treat them and are generating a manuscript summarizing her findings. According to penn medicine, this will be the largest and most extensive report ever compiled on rp. The rp foundation also 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.”

“Fundraising fundraising fuels and drives our research initiatives and is proud of guidestar's platinum seal of transparency designation. In fy24, the foundation engaged in the following annual, patient-led, motorsports- targeted and salon fundraising initiatives: -annual giving tuesday appeals -rp warrior 5k walk. Patients from across the us and globally participated in this event organized by rp warrior, dan smith, to raise funds to fuel relapsing polychondritis research. Dan's son designed and sold t-shirts for this event, with the proceeds directed toward rp focused research. -watt's the difference cycling event was initiated by an individual in honor of his young nephew who was diagnosed with rp prior to his 9th birthday. The goal of this patient-initiated fundraiser is to "challenges each of us to "be the difference" for patients battling rp. Each pedal stroke, coupled with your contributions, helps bring researchers closer to scientific discoveries that will potentially improve the diagnosis and treatment options for patients with rp - ultimately, these may lead to a cure". -2024 vip race weekend at the indianapolis 500, hosted by long time relapsing polychondritis foundation partners, kevin lee and james hinchcliffe, this event raised funds to fuel rp-related autoimmune disease research while providing attendees with unforgettable experiences at the 108th running of the indianapolis 500. This distinctive fundraising event included "suite" access to the legends day drivers meeting and pre-race rehearsal as well as a vip garage tour and autograph session. Additionally, ticketholders participated in a carb night happy hour with james hinchcliff and friends at the root and bone in broad ripple, indiana proceeds from this benefited the stop and go foundation, the relapsing polychondritis foundation and auto immune disease research. -annual erace for rp: race for rp partnered with podium esports and monday night racing for the simulation eracing charity event. The event is hosted on the iracing platform and has featured races at daytona international speedway's road course and circuit of the americas (cota) in austin, tx. Thanks to the generosity of a long-standing partner who has provided a 3:1 match for gifts received, the sim erace raises significant funds to support rp and related autoimmune research -driving research (2023): hosted by imsa racecar driver, jackson lee. Donors who made a gift of 100 or more to support rp and related autoimmune disease research were able to get their name (or the name of who they're "racing for") on jackson's racecar. As a special thank you, anyone who donated were invited to a trackside meet and greet, provided they attended the race in sebring. -kettlebell fundraiser: the rp foundation was the kettlebell one hour long cycle international charity event's featured charity in 2023. -neil's milestone birthday: in lieu of birthday gifts, gifts were directed to the rp foundation to support rp and related autoimmune disease research. The rp foundation is making progress in all three pillars of our purpose, as evidenced by the 300% increase in the number of donors that the foundation realized in 2022. Looking ahead: the rp foundation is incredibly thankful for the rp and related autoimmune disease discoveries and advancements that our talented clinical research partners continue to make. With additional support, we will continue to be a source of hope and a catalyst for research that will ultimately treat and cure rp.”