About
News and press releases about the Joshua Frase Foundation and its efforts behind CNM/MTM
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.
Read More
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.
Read More
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,...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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
Read More
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...
Read More
Mon, Apr 04, 2016
Human Gene Therapy May 2016
Dream On: The Pursuit to Cure Myotubular Myopathy Born Out of a Mother's Vision
Read More
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’...
Read More
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...
Read More
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.
Read More
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...
Read More
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...
Read More
Thu, Nov 08, 2012
Press Release: Boston Children's Hospital announces international genomics competition winner
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....
Read More
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...
Read MoreOur recent campaign to increase participation in our Family Registry was published in MDA Quest Magazine, and can be seen below.