The Joshua Frase Foundation for Congenital Myopathy Research, Inc.

aka Joshua Frase Foundation   |   Ponte Vedra Beach, FL   |  www.joshuafrase.org

Mission

The Joshua Frase Foundation (JFF) is a 501C3 non-profit organization that was founded in 1996; a year after Paul and Alison’s son was born with an ultra rare and fatal neuromuscular disorder. Without hesitation, the foundation began funding cutting-edge research in the area of regenerative medicine, gene therapy and genetics since 1997. JFF’s mission is twofold: To continue to be a catalyst in finding a cure or treatment for centronuclear and myotubular myopathies while supporting families whose lives are affected by these disorders. Not only has JFF been able to fund groundbreaking science, pioneering into a curative treatment that has the potential to transform neuromuscular research; it has also built an international community of children and their parents.

Ruling year info

1997

President

Alison Rockett-Frase

Co Principal Officer

Paul Frase

Main address

PO Box 2041

Ponte Vedra Beach, FL 32004 USA

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EIN

59-7059890

NTEE code info

Nerve, Muscle, Bone Research (H50)

Pediatrics (G98)

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

The Annual JFF Muscle Dream Team Gala was created in 1997 to raise funds in the fight against neuromuscular diseases, specifically Myoptublar Myopathy/Centronuclear Myopathy (MTM/CNM).The dream of someday finding a cure seems very possible, giving hope to all whose lives have been touched by a child suffering from these tragic disorders.

Population(s) Served

Where we work

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Financials

The Joshua Frase Foundation for Congenital Myopathy Research, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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The Joshua Frase Foundation for Congenital Myopathy Research, Inc.

Board of directors
as of 07/01/2024
SOURCE: Self-reported by organization
Board co-chair

Mr. Alex Zecca

The Raptor Group Management


Board co-chair

Mrs> Laura Zecca

Chad Hennings

Hennings Management Corporation

Alex Zecca

The Raptor Management

Jeffery Dixon equ.

Roaring Lamb Ministries

Paul Miles Frase

Paul Frase Homes

Teri Dixon

Alison Rockett Frase

The Joshua Frase Foundation

Daryl Johnston

NFL Fox Commentator