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News and press releases about the Joshua Frase Foundation and its efforts behind CNM/MTM

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Mon, Jul 09, 2018

The Matriarch of the First MTM Dog Colony...The Power of Patient Advocacy

The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The...
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Thu, Jun 21, 2018

Rare Leader: Alison Rockett Frase, President of the Joshua Frase Foundation

The Basics Name : Alison Rockett Frase Title : President, co-founder, and patient advocate ...
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Thu, Jun 07, 2018

Gene Therapy for Myotubular Myopathy: Early Signs of Success!

Parents cherish developmental milestones, from a newborn’s grip of an offered finger; to an infant’s holding her head up the first time; to rolling over, creeping, and...
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Fri, Jun 01, 2018

From Canines to a Cure

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Fri, May 18, 2018

Audentes Announces Continuing Positive Data from First Dose Cohort of ASPIRO, a Phase 1/2 Clinical Trial of AT132 in Patients With X-Linked Myotubular Myopathy

Audentes Therapeutics, Inc. (Nasdaq: BOLD), a biotechnology company focused on developing and commercializing gene therapy products for patients living with serious,...
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Wed, Feb 28, 2018

A Boy With the Will to Live: Biobanking Contributing to Breakthroughs in Rare Diseases

Joshua Frase was born on February 2, 1995. When Joshua was three months old, a muscle biopsy revealed that he had the ultra-rare X-linked myotubular myopathy (XLMTM), a...
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Thu, Jan 04, 2018

Audentes Announces Positive Interim Data from First Dose Cohort of ASPIRO, a Phase 1/2 Clinical Trial of AT132 in Patients With X-Linked Myotubular Myopathy

Audentes Therapeutics, Inc. (Nasdaq: BOLD), a biotechnology company focused on developing and commercializing gene therapy products for patients living with serious,...
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Wed, Nov 22, 2017

UW, Family Rewriting Neuromuscular Research

Physicians and researchers at the UW Medicine Institute for Stem Cell and Regenerative Medicine have partnered up with a nonprofit foundation in one of the leading efforts to...
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Tue, Oct 17, 2017

Transnetyx produces "Brick in the Wall," second short film in its Love Letter Series

MEMPHIS, Tenn., Oct. 17, 2017 /PRNewswire/ -- Transnetyx, an automated genotyping company that serves biomedical researchers worldwide, today announced the premier of the...
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Wed, Oct 11, 2017

The Joshua Frase Foundation for Congenital Myopathy Research, Inc.

Article on Alison's speech at the National Animal Interest Alliance, October 2017
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Thu, Sep 21, 2017

Audentes Therapeutics Announces Dosing of First Patient in ASPIRO, a Phase 1/2 Clinical Trial of AT132 for the Treatment of X-Linked Myotubular Myopathy

SAN FRANCISCO, Sept. 21, 2017 /PRNewswire/ -- Audentes Therapeutics, Inc. (Nasdaq: BOLD), a biotechnology company focused on developing and commercializing gene therapy...
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Wed, Jun 07, 2017

Gene Therapy Leads to Long-Term Benefits in Dog Model of Devastating Childhood Disease

Researchers who previously showed that a gene therapy treatment could save the lives of dogs with a deadly disease called myotubular myopathy—a type of muscular dystrophy...
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Thu, May 18, 2017

KIRO 7 Investigates Revolutionary Treatment in Dogs to be Tested in Children


Tue, Mar 21, 2017

Determined Parents are Moving the Needle on Gene Therapy

Families of patients are starting advocacy groups, raising money for research, and founding biotech companies to advance cures for rare diseases.
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Fri, Feb 03, 2017

Local Foundation Makes Headway In Gene Replacement Therapy

One little boy, who was granted just 15 years on this earth, touched a lot of people for the good.
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Thu, Jan 26, 2017

An Active Philanthropist

An active philanthropist, Costa is an avid supporter and board member of various charitable organizations, such as the Multiple Sclerosis Foundation; Joshua Frase Foundation,...
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Wed, Nov 23, 2016

A Walk to Remember

Students at Landrum Middle School in Ponte Vedra Beach participated in the ninth annual Walk of Remembrance on Monday. The purpose of the event was to allow students to honor...
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Sat, Nov 12, 2016

Pine Brook Resident Advocates for Patients with Rare Muscle Disease

MONTVILLE, NJ – When a family member is diagnosed with a debilitating condition, it’s natural to reach out to not only family, but others whose loved ones are going through...
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Mon, Nov 07, 2016

Odessa Mom Spreads Awareness of Her Son's Fatal Muscle Disease

Lindsay Jones and Ryan Jones are married. Ryan is an Odessa firefighter and Lindsay is a stay-at-home mom, but what she does, requires 24 hour love and care, for little...
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Mon, Oct 17, 2016

Paul Frase remembers former teammate Dennis Byrd

His post football-playing travels landed former Jets defensive tackle Paul Frase in Oklahoma City about eight or nine years ago for business, and Frase says now that he...
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Our recent campaign to increase participation in our Family Registry was published in MDA Quest Magazine, and can be seen below.