Mission
Research for Myotubular Myopathy and other Congenital Myopathies, educational information, and research support.
Public Charity
The Joshua Frase Foundation for Congenital Myopathy Research Inc
The Joshua Frase Foundation for Congenital Myopathy Research Inc is a Public Charity headquartered in Ponte Vedra Beach, FL. Financial data from the 2024 filing: $139K revenue, $27K expenses, $148K total assets. 14 publicly reported grants to this organization, totaling roughly $225K, appear in IRS filings.
EIN: 597059890
Ponte Vedra Beach, FL
Latest filing: 2024
Total Revenue$139K
Total Expenses$27K
Total Assets$148K
Grant Records14
Funding Total$225K
Filing Years2020–2024
Sample Grants Received
TO SUPPORT A 1:1 MATCH TO FUND CONTINUED RESEARCH INTO GENE THERAPY TREATMENT OF MYOTUBULAR MYOPATHY
$106,500
For grant recipient's exempt purposes
$13,250
ANNUAL CONTRIBUTION
$1,000
TO HONOR JOSHUA'S 16 YEARS OF LIFE AS THE FOUNDATION CONTINUES THE WORK FOR 18 YEARS TO FIND A CURE FOR CONGENITAL MYOPATHIES
$18,000
ANNUAL CONTRIBUTION
$1,000
Showing up to 5 of 14 total records — full history available with membership.
Officers & Directors
President
Alison Rockett
Director
Angelica Townshend
Director
Daryl Johnston
Director
Edward Costa
Vice president
Lisa Nickerson
Secretary
Paul Frase
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2024 | $139K | $27K | $148K |
| 2023 | $51K | $88K | $48K |
| 2022 | $67K | $90K | $75K |
| 2021 | $214K | $155K | $93K |
| 2020 | $67K | $149K | $49K |
Between 2020 and 2024, reported annual revenue grew from $67K to $139K (+106%), with total assets most recently reported at $148K.
Interactive year-over-year charts and full filing details available with membership.