The Progeria Research Foundation Inc

Organization Overview

The Progeria Research Foundation Inc is located in Peabody, MA. The organization was established in 1999. According to its NTEE Classification (H12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Medical Research and related organizations. As of 12/2021, Progeria Research Foundation Inc employed 14 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Progeria Research Foundation Inc 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 12/2021, Progeria Research Foundation Inc generated $49.2m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 57.8% each year . All expenses for the organization totaled $3.2m during the year ending 12/2021. While expenses have increased by 1.6% per year over the past 7 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.

Since 2016, Progeria Research Foundation Inc has awarded 23 individual grants totaling $940,695. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

DISCOVER TREATMENTS & CURE FOR PROGERIA & ITS AGING-RELATED DISORDERS, INCLUDING HEART DISEASE.

Describe the Organization's Program Activity:

Part 3 - Line 4a

RESEARCH GRANTS: PRF HAS AWARDED 81 RESEARCH GRANTS TOTALING $8.77 MILLION THROUGH PEER REVIEW BY OUR VOLUNTEER MEDICAL RESEARCH COMMITTEE. AWARDS OF UP TO $75,000 PER YEAR, FOR UP TO TWO YEARS, HAVE ALLOWED INNOVATIVE NEW RESEARCH IN PROGERIA TO THRIVE.


PROGERIA DRUG TRIAL: THE PROGERIA RESEARCH FOUNDATION AND BOSTON CHILDREN'S HOSPITAL CONTINUE THEIR PARTNERSHIP FOR CONDUCTING CLINICAL DRUG TRIALS FOR CHILDREN WITH PROGERIA.THE CLINICAL TRIAL TEAM: A TEAM OF PROFESSIONALS AT BOSTON CHILDREN'S HOSPITAL AND BRIGHAM & WOMEN'S HOSPITAL IS WORKING WITH CHILDREN WITH PROGERIA FROM AROUND THE GLOBE.(SEE SCHEDULE O FOR CONTINUATION) THE PROGERIA 2-DRUG, PHASE I/II TRIALIN 2015, PRF OBTAINED ALL NECESSARY APPROVALS FOR ITS THIRD TYPE OF CLINICAL TRIAL, WHICH WILL ASSESS A TWO-DRUG COMBINATION OF LONAFARNIB AND EVEROLIMUS. EVEROLIMUS IS A FORM OF THE DRUG RAPAMYCIN, BUT EVEROLIMUS CAN BE MORE EASILY GIVEN TO CHILDREN WITH PROGERIA. EVEROLIMUS TARGETS A DIFFERENT PATHWAY THAN LONAFARNIB, AND THE TRIAL IS DESIGNED TO DETERMINE IF THE COMBINATION PROVIDES A BETTER TREATMENT THAN THE FDA-APPROVED LONAFARNIB ON ITS OWN. THE PROGRESS OF THIS TRIAL IS DETAILED BELOW.IN 2016, PHASE I BEGAN. THE PURPOSE OF A PHASE I TRIAL IS TO DETERMINE THE SAFEST MAXIMUM DOSAGE OF A DRUG. PHASE I WAS COMPLETED IN MID-2017. IN JULY 2017, FOLLOWING THE SUCCESSFUL COMPLETION OF PHASE I, THE CLINICAL TRIAL MOVED ONTO PHASE II. PHASE II OF THE TRIAL TESTS THE EFFECTIVENESS OF THE 2-DRUG COMBINATION. FROM 2016 THROUGH 2020, 60 CHILDREN AND YOUNG ADULTS WITH PROGERIA FROM 26 COUNTRIES SPEAKING 16 LANGUAGES WERE ENROLLED AND TRAVELED TO BOSTON FOR THEIR TRIAL VISITS AT BOSTON CHILDREN'S HOSPITAL, WHERE THEY UNDERWENT A SERIES OF TESTS AND RECEIVED NEW DRUG SUPPLY. IN 2021, THE 20+-MEMBER TRIAL TEAM CONTINUES TO ENSURE THAT THE CURRENT PRF-FUNDED CLINICAL TRIAL IS RUNNING EFFECTIVELY AND EFFICIENTLY. DUE TO THE COVID-19 PANDEMIC, FINAL TRIAL VISITS FOR SOME PATIENTS HAS BEEN DELAYED. ONCE TRIAL VISITS ARE COMPLETE, THE TRIAL TEAM WILL EVALUATE THE DATA TO DETERMINE WHETHER THE 2-DRUG COMBINATION OF EVEROLIMUS PLUS LONAFARNIB IS A MORE EFFECTIVE TREATMENT FOR PROGERIA THAN LONAFARNIB ALONE.GAIN ON SALE OF PRIORITY REVIEW VOUCHERS: IN JANUARY 2021, PURSUANT TO THE COLLABORATION AND SUPPLY AGREEMENT ENTERED INTO BY THE ORGANIZATION, THE ORGANIZATION AND AN UNRELATED PARTY REACHED AN AGREEMENT WITH A THIRD PARTY FOR THE SALE OF U.S. FOOD AND DRUG ADMINISTRATION PRIORITY REVIEW VOUCHER. THE ORGANIZATION'S SHARE OF THE PROCEEDS WAS $47,442,250. THE ORGANIZATION RECOGNIZED A GAIN RELATED TO THIS SALE DURING THE YEAR ENDED DECEMBER 31, 2021 TOTALING $46,493,405, WHICH REPRESENTS THEIR SHARE OF THE PROCEEDS LESS CERTAIN SELLING COSTS OF $948,845.


FUTURE TRIAL EFFORTS: PRF ENGAGES MEMBERS IN THE SCIENTIFIC COMMUNITY WITH EXPERTISE IN VARIOUS DRUGS AND/OR GENETIC THERAPIES FOR THE TREATMENT AND POTENTIAL CURE FOR PROGERIA. THE INVESTIGATION AND COLLABORATIVE EVALUATION OF DRUG THERAPIES IS PURSUED TO IDENTIFY DRUG CANDIDATES/GENETIC THERAPIES THAT CAN LEAD TO FUTURE CLINICAL TRIALS.


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Board, Officers & Key Employees

Name (title)Compensation
Audrey Gordon
President
$170,096
Paula Kelly
Treasurer/director
$0
Barbara Gordon
Clerk
$0
Scott Berns
Director
$0
Karen Ballack
Director
$0
Kim Paratore
Director
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$428,225
Related organizations$0
Government grants $173,957
All other contributions, gifts, grants, and similar amounts not included above$1,100,192
Noncash contributions included in lines 1a–1f $71,192
Total Revenue from Contributions, Gifts, Grants & Similar$1,702,374
Total Program Service Revenue$0
Investment income $930,288
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $79,572
Net Income from Fundraising Events $14,123
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $49,219,762

Grants Awarded

Over the last fiscal year, The Progeria Research Foundation Inc has awarded $70,909 in support to 2 organizations.

Grant RecipientAmount

UNIVERSITY OF PENNSYLVANIA

PURPOSE: MEDICAL RESEARCH

$52,159

UNIVERSITY OF CALIFORNIA SAN FRANCISCO

PURPOSE: MEDICAL RESEARCH

$18,750
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 1 grants that The Progeria Research Foundation Inc has recieved totaling $2,000.

Awarding OrganizationAmount
Kahn Family Charitable Foundation

Wellesley, MA

PURPOSE: PROGRAM SUPPORT

$2,000
View Grant Recipient Profile

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