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.”

“The board met to discuss the foundation's need for a full-time director based on our purpose and the unprecedented organizational growth that the foundation experienced over the past year. An informal market survey regarding pay rates and responsibilities for equivalent positions in similar non-profit organizations was performed. The responsibilities/accomplishments of the current contractual director/president was reviewed. Based on the board discussion and market survey, a full-time position was offered to the president with an annual compensation in 2022.”

“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 six nationally and internationally recognized motorsports teams who leveraged their platforms to increase awareness regarding relapsing polychondritis (rp) and the rp foundation. In april 2021, rp foundation was the featured medical charity in the tampa bay medical professionals magazine. The article highlighted the rp foundation and race for rp's overarching efforts to accelerate research for rp. The rp foundation also supported the patients with relapsing polychondritis social network group as well as a rp mask project (may 2021) to assist rp patients and their families with acquiring face masks during the covid-19 pandemic. In june 2021, the rp foundation partnered with singer, songwriter, and producer denise stefanie who released a new single, "all in," in support of race for rp and the rp foundation. The powerful piece, written, composed, and performed by stefanie, seeks to raise awareness and advance research for the rare autoimmune disease. In february 2022, the rp foundation supported exhibits created by patients, advocates, and researchers that were presented on rare disease day at the nih. The exhibits included the following posters: "all in - a powerful anthem for anyone facing a challenge, especially patients diagnosed with relapsing polychondritis (rp)" by artist and composer denise stephanie; "collaborative advocacy helps me and other patients with relapsing polychondritis" by rp patient dan smith; "fighting health-related misinformation using social media" by rp patient and support group moderator susie ratledge; "in race for rp - driving for hope" featuring the foundation's motorsports partners.”

“Research: per a progress report received in october 2021, funds provided by the rp foundation in early 2021 continued to support to the penn rp center's initiatives. In june 2021, the vasculitis clinical research consortium (vcrc) posted the study on clinicaltrials.gov. This study collects dna, serum, plasma, urine, and peripheral blood mononuclear cells specimens from patients with rp with the hope of advancing scientific discoveries regarding the cause of relapsing polychondritis. By october 2021, thirty- one subjects were enrolled in the study. The rp foundation also provided funds to expand vexas syndrome studies being performed at the national institutes of health (nih). These resources facilitated the identification of a large cohort of vexas patients and led to the discovery that specific mutations can serve as biomarkers of disease severity as well as a prediction of disease course. This research provided the basis of the plenary session titled, "genotype and transfusion dependence predicts mortality in vexas syndrome, a newly described disease with overlap inflammatory and hematologic features" presented at the american college of rheumatology in november 2021. In march 2022, the rp foundation partnered with the researchers at nyu langone health and the nih to build upon the vexas work and support expanded genetic mutational analyses in patients with autoimmune disease. This project will leverage a collaborative network of talented researchers to determine the mechanism by which genetic variations lead to systemic inflammation and disease.”

“Education: in june 2021, the relapsing polychondritis foundation authored a poster about the founding and launch of the penn rp program (philadelphia, pa) that was accepted for presentation by the european alliance of associations for rheumatology (eular) 2021 virtual congress which was held in paris, france. The poster highlighted how continued attendance at conferences and relationship-building with clinicians, researchers, patients, and advocates galvanized the establishment of a research initiative and partnership between the university of pennsylvania rp program and the national institutes of health (nih) sponsored vasculitis clinical research consortium (vcrc). In november 2021, as a component of the penn rp program, the rp foundation supported a study conducted by dr. Banerjee and clinical scientists at the nih that described the nasal manifestations of rp that was presented at the annual scientific meeting of the american college of rheumatology. Additionally, the rp foundation sponsored two patient perspective posters that were accepted for presentation at the american college of rheumatology (acr) virtual annual meeting, acr convergence 2021. These posters provide the medical community with the opportunity to better understand the patient's perspective regarding living with rp and facilitate pathways for more efficient patient care.”