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

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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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Wed, Aug 03, 2016

Guest Blog: Tour For A Cure

Alison's visit with European MTM families, MTM European Family Conference, European Neuromuscular Center, Genethon, and The French MuscularDystrophy
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Fri, Apr 29, 2016

Team Titan Research Conference, European Neuro Muscular Center

The goal and purpose of this ENMC workshop was to establish an international database of TTN (Titin gene) mutations, variations and their...
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Mon, Apr 04, 2016

Human Gene Therapy May 2016

Dream On: The Pursuit to Cure Myotubular Myopathy Born Out of a Mother's Vision
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Tue, Jul 21, 2015

RARE Champion of Hope – Advocacy

I want to congratulate Alison Rockett Frase for winning such a prestigious award for Advocacy from the Global Genes foundation, a group that has created the ‘Gold Standard’...
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Mon, Aug 18, 2014

The Will to Live and the Strength for a Cure

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles...
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Thu, May 16, 2013

Restoring muscle function in a rare, devastating disease

This two-part series examines two potential treatment approaches for myotubular myopathy, a genetic disorder that causes muscle weakness from birth.
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Tue, Mar 12, 2013

Registry Seeks Participants with Congenital Muscle Disorders

Disease registry seeks input from people with congenital muscular dystrophies, congenital myasthenic syndromes or other congenital muscle disorders, including those with no...
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Tue, Jan 22, 2013

Enzyme Replacement Therapy Shows Promising Results in X-Linked Myotubular Myopathy

X-linked myotubular myopathy (XLMTM) is a severe muscle disease caused by an absence of a protein called myotubularin.  There is currently no treatment for this disorder, and...
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Tue, Nov 06, 2012

What's Making Adam Sick?

For more than a decade, doctors have been trying to figure out what’s behind the weakness and fatigue that caused 11-year-old Adam Foye to miss 60 days of school last year....
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Thu, Dec 01, 2011

The Blood Alliance helps The Joshua Frase Foundation

The Blood Alliance is donating $1 to The Joshua Frase Foundation for each blood donation made at any of its donor centers during December to honor the brief life of Joshua...
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Wed, Jun 15, 2011

New Development of Treatment for Myotubular Myopathy Initiated by Joshua Frase Foundation

The Joshua Frase Foundation, a Jacksonville-based nonprofit, announces its collaboration with Généthon, a French biotherapy lab, and Wake Forest University School of...
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Mon, Jun 13, 2011

Hold Onto Your Dreams

Joshua was born with a rare muscular disease, Myotubular Myopathy, and he wasn’t supposed to live for more than a day but he beat the odds and lived till he was...
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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.