Relapsing Polychondritis Awareness And Support Foundation

Organization Overview

Relapsing Polychondritis Awareness And Support Foundation, operating under the name Relapsing Polychondritis Foundation, is located in New York, NY. The organization was established in 2014. According to its NTEE Classification (G19) the organization is classified as: Support N.E.C., under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Relapsing Polychondritis Foundation is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 03/2022, Relapsing Polychondritis Foundation generated $1.0m in total revenue. All expenses for the organization totaled $1.1m during the year ending 03/2022. While expenses have increased by 78.0% per year over the past 4 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2022

Describe the Organization's Mission:

Part 3 - Line 1

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").

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


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Board, Officers & Key Employees

Name (title)Compensation
David Bammert
President
$80,000
David Derosa
Secretary/tr
$0
Michael Linn
Director/vic
$0
Nancy Linn
Director/cha
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$1,004,262
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$1,004,262
Total Program Service Revenue$0
Investment income $2,348
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $1,006,610

Grants Awarded

Over the last fiscal year, Relapsing Polychondritis Awareness And Support Foundation has awarded $130,000 in support to 2 organizations.

Grant RecipientAmount

THE UNIVERSITY OF PENNSYLVANIA

PURPOSE: RESEARCH

$120,000

LUPUS FOUNDATION OF AMERICA

PURPOSE: EDUCATION

$10,000
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 2 grants that Relapsing Polychondritis Awareness And Support Foundation has recieved totaling $19,817.

Awarding OrganizationAmount
American Online Giving Foundation Inc

Newark, DE

PURPOSE: GENERAL SUPPORT

$19,754
Lumen Clarke M Williams Foundation

Wilmington, DE

PURPOSE: GENERAL SUPPORT

$63
View Grant Recipient Profile

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