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 proudly showcase our logo and promote our purpose. The foundation launched full throttle, a new rp awareness podcast, hosted by greg creamer. Full throttle provided exclusive interviews and insights regarding rp, related autoimmune diseases, and racing to engage and energize motorsports fans. It also featured foundation-supported collaborative research projects that are advancing clinical knowledge regarding rp and ushering in a new era of hope for patients with rp. Cbs sports interviewed the rp foundation during the nashville grand prix and featured race for rp during the ferrari challenge north america. The rp foundation launched a youtube channel and ignited communication via social platforms and an enewsletter to increase awareness and support for the innovative research that the foundation is investing in. As a result of robust communications across all social media channels, the rp foundation experienced substantial growth in the number of followers, with enewsletters demonstrating a 60% open rate (significantly exceeding industry standards).”

“Research: the rp foundation made significant investments in collaborative research that helped drive rp and related autoimmune diseases to the forefront of ground-breaking discoveries. The foundation supported research being conducted 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. This study is exploring the mechanisms of progression of relapsing polychondritis (rp) to myelodysplastic syndromes (mds) and blood-based malignancies and will map the hematologic changes that take place during the trajectory of disease using state-of-the-art genetic and transcriptomic approaches. The foundation's investments in the nyu grossman school of medicine and nih vexas (vacuoles, e1 enzyme, x-linked, autoinflammatory, somatic) syndrome research continues to advance scientific knowledge and improve patient care. In 2022, vexas was deemed the "year's best advancement in hematology-related diagnoses" by the american society of hematology. Clinical scientists believe knowledge gained from vexas research will potentially improve the classification of blood-based and adult-onset recurrent autoimmune diseases like relapsing polychondritis. Vexas syndrome research also brought several autoimmune diseases closer to the discovery of a biomarker by demonstrating that autoimmune disorders previously thought to be unrelated to each other, like relapsing polychondritis (rp), polyarteritis nodosa, sweet syndrome, and giant cell arteritis, share a common acquired, somatic mutation in the uba1 gene. Two globally renowned healthcare organizations, the international consensus classification system (icc) and the world health organization (who), added vexas to their classification systems for hematological cancers. The icc listed vexas under the spectrum of pre-malignant "clonal cytopenias,- and the who acknowledged the close relationship between systemic inflammation, clonal somatic mutations, and myeloid malignancies based on data from vexas with uba1 mutations and other emerging entities. The inclusion of vexas in the classification resources that clinicians use to categorize blood-based cancers is extremely important. It increases awareness of vexas and related systemic inflammatory diseases among clinicians and pathologists and promotes a holistic approach to patient care, from diagnosis to post- diagnosis management. 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). The rp foundation also assisted in the establishment of the vexas foundation to help provide a resource for vexas patients, researchers, and clinicians. Additionally, the foundation supported purpose biobank which will create a centralized, state-of-the-art collection of clinical and research data so researchers can vastly improve our collective understanding of relapsing polychondritis and related diseases. The 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.”

“Education: the rp foundation supported several rp patients, advocates, and researchers who exhibited at this year's rare disease day at the national institutes of health. This year's rare disease day exhibits included a presentation by mike linn, director of the rp foundation, and dr. Marcela ferrada, researcher at the nih. Their presentation titled, "where there is research, there is hope", highlighted the collaborative research initiatives the rp foundation supports and discussed how these projects bring patients hope. The foundation also supported rp patient, melissa allman, ph.d.'s scientific poster titled, "it is due to stress - but which type of stress?" which was selected for display at the american college of rheumatology's (acr) annual meeting in philadelphia, pa.”

“Fundraising fundraising fuels and drives the rp foundation's research initiatives. In 2022, the foundation invested in innovative, engaging ways to raise funds. The highlights include: "inaugural rp warrior 5k walk. Organized by rp warrior, dan smith, the inaugural 5k warrior walk was a tremendous success. From california to florida and even canada to israel, rp warriors and their supporters showed up in a big way. Twenty-five teams and dozens of individuals participated in the walk, and engaged more than 260 donors to fuel relapsing polychondritis research. "inaugural erace for rp. Race for rp partnered with podium esports and monday night racing for the inaugural simulation eracing charity event. The event was held on the iracing.com platform at daytona international speedway's road course in a two-hour timed endurance race. Thanks to the generosity of a long-standing partner who provided a 3:1 match for gifts received, the sim erace raised 401,000 to support rp and related autoimmune research. "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.”