About FSHD Canada Foundation

FSHD clinical trials are coming to Canada – get registered here: Canadian Neuromuscular Disease Registry

Funded Research

Working Towards an ASO Treatment for FSHD2 Patients

Investigator: Dr. Stanley Crooke FSHD is a rare disease. FSHD2 is even more rare. Only 5% of all FSHD patients have FSHD2. We don’t want them to get left behind. The…

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Accelerating Canadian Regulatory Approvals

The Objective Several promising treatments for FSHD are going into clinical trials very soon. Hopefully, these therapies will be approved for use by FSHD patients in the next couple of…

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Diagnostics

Investigator Takako Jones, PhD (University of Nevada, Reno School of Medicine) Current FSHD diagnostics are complex, expensive, and not widely available. In addition, the disease itself has wide variability in…

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Biomarkers

Investigators: Yi-Wen Chen (Children’s National Hospital, Washington, DC) Giorgio Tasca & Enzo Ricci (Università Cattolica del Sacro Cuore – Rome) Sabrina Sacconi (Centre Hospitalier Universitaire de Nice) Biomarkers are used…

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Clinical Trial Research Network (CTRN)

Investigators: Jeffrey Statland (University of Kansas Medical Center) and Rabi Tawil (University of Rochester Medical Center) This project includes support for the CTRN to continue the Natural History Studies (MOVE…

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Muscle targeted immunosuppression as an FSHD therapeutic

Investigator: Andreia Marcelino Nunes, PhD; University of Nevada, Reno School of Medicine FSHD is caused by aberrant increased expression of the DUX4 gene in skeletal myocytes, which initiates a pathogenic…

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