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FSHD Registry
Nov 21, 2016
Dr. Rabi Tawil discusses the National Registry based in Rochester, NY.
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Progress Update: DUX4 activity in hESC-derived muscle
Nov 14, 2016
Final update for grant to Genea Biocells.
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FSHD Research Funding Overview 2015
Nov 7, 2016
FSHD funding overview compiled by Wouter Suurmond of Facio Therapies BV.
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IncuCyte brings live cell imaging to Genea Biocells
Oct 28, 2016
The first application for this technology is FSHD disease modelling and drug discovery.
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Acceleron to Webcast Overview of ACE-083 Phase 2 Trial
Oct 27, 2016
Webcast to be held Oct 28, 2016 at 10:00 a.m. EDT with Dr. Statland. Archive available on website.
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Grant Awarded to Develop Outcome Measure
Oct 26, 2016
A proposal to study the histopathological features of muscle in a large biobank from FSHD patients and their first degree family members.
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Grant Awarded to Explore Innate Immunity
Oct 25, 2016
Development of an in vitro model of FSHD innate immunity.
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aTyr Pharma ongoing Phase 1b/2 Clinical Trials
Oct 6, 2016
aTyr Pharma, a company engaged in the discovery and development of therapeutics to address severe rare diseases, is currently conducting two trials of Resolaris (ATYR1940) in patients with rare myopathies with an immune component.
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Commonality of Pain in DM & FSHD
Aug 26, 2016
258 members of the URMC Registry completed a survey last year. Results indicate that 79% of FSHD patients and 68% of DM patients experience pain.
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ENMC Travel Grant
Aug 20, 2016
Small but critical grant awarded two key stakeholders in the push for FSHD trial readiness.
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#MyotubeMike4FSHD muscle disease awareness campaign
Jul 18, 2016
Your hashtags earn money for Friends of FSH Research organization
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Smile Always
Jul 14, 2016
When using Amazon.com do you sometimes forget to go to Smile.Amazon.com?
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First stem cell model of muscular dystrophy published
Jul 14, 2016
Implications for FSHD and therapeutic developments
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NCATS Tour
Jul 6, 2016
NCATS Leading Crucial, Collaborate Efforts to Advance Rare Diseases Research.
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World FSHD Awareness Day
Jun 20, 2016
Seattle Mayor Ed Murray and US Senator Maria Cantwell pay tribute to the first ever World FSHD Awareness Day.
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Myotube Mike at ISSCR
Jun 17, 2016
Genea Biocells is donating to Friends for every picture of Myotube Mike tagged as #MyotubeMike4FSHD on Facebook, Twitter or Instagram.
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Serum Biomarkers
Jun 17, 2016
Sheila had the pleasure of meeting with Daniel G. Miller, Geneticist at Seattle Children’s Hospital, and Associate Professor at the University of Washington. Dr. Miller and colleagues from the University of Rochester, the University of Washington, and Seattle Children’s Hospital recently published a cross sectional study of two independent groups of people with FSHD, and identified serum biomarkers. The landmark study was published in the journal Neuromuscular Disorders.
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Call for Proposals
Jun 16, 2016
We are re-issuing our 2016 general call for research proposals. We are accepting any proposal that support a path toward a treatment or cure for FSH muscular dystrophy.
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GiveBIG Results
May 24, 2016
Over $13K for research.
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FSH Summit Report 2016
May 23, 2016
Report of FSHD Summit held in Portland, Oregon, February 29 to March 1 of 2016.