Accelerating Research Since 2004

The mission of Friends of FSH Research is to accelerate the discoveries that will lead to treatments or cures for FSHD. To achieve our goal, we actively manage a portfolio of research that supports a pipeline for drug discovery. Our board, staff, volunteers, and world-class scientists are fully committed to transparent, reproducible, and transformative science that will inspire hope for people with FSHD. Learn more >>

Latest News
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Progress Update: Flex fund for clinical study participant reimbursement
Jul 11, 2024
Patient study update by Dr. Kyba after a Covid hiatus.
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Progress Update: Consequence of human satellite II repeat expression in FSHD
Jun 27, 2024
Findings indicate selective interactions of RNA binding proteins with HSATII RNA, which may impact mRNA processing pathways downstream of DUX4 expression; and that HSATII RNA structure dictates protein recruitment.
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World FSHD Day - Interview with Rick & Terry
Jun 20, 2024
FSHD Straight Talk: 2024 World FSHD Special!
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Report: Molecular Markers of FSHD
May 30, 2024
First year progress.
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Report: Kennedy Krieger Institute Data-Lake Expansion
May 18, 2024
The progress report highlights advancements in constructing an MRI data-lake for studying Facioscapulohumeral Muscular Dystrophy (FSHD) using AI segmentation techniques.
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Report: Mini-Pig Atlas Development
May 18, 2024
Finalizing biopsy fiducial details to ensure correspondence between histology, DUX4, and MRI data, with atlas generation to begin in earnest in the summer of 2024.
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Over $8.3 million
funded to date,
attracting millions more
to FSHD research

 

Friends is proud to help support free FSHD testing for individuals at
myfshd.org

 

Current FSHD Studies Worldwide

See listings at:
ClinicalTrials.gov
Please consider participating.

 

"Hopefully one day FSHD will be stopped in its tracks. I know that there is still a long road ahead, with many milestones to pass but the journey isn’t quite so scary knowing that I am not alone and that there are those willing to keep pushing ahead, guiding the way until we find the key to unlock that final door."

- T. Pilato

 

Our vision: One day the diagnosis of FSH Muscular Dystrophy will be followed by "...there is a treatment."