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Ask the Expert: Nonsense Mediated Decay
Sep 24, 2020
Board member Dr. Premi Haynes interviews grant recipient Dr. Sujatha Jagannathan.
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Progress Update: Improved, accessible, and affordable FSHD diagnostics
Sep 15, 2020
Dr. Peter Jones provides a 6 month update on validating an affordable epigenetic diagnostic. The validation could be helped by more volunteers.
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Progress Update: CTRN International Sites
Sep 14, 2020
Dr. Rabi Tawil provides an update on the expansion of the ReSolve Study to include two European Sites.
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Progress Update: Molecular Mechanism of p38 Kinase-mediated inhibition of DUX4
Sep 10, 2020
Dr. Vangipurapu from the Sverdrup Lab provides a progress update.
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Michelle Li with KING5
Aug 8, 2020
Michelle Li of KING5 on Mask-r-Aid Ball.
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Progress Update: Deciphering the role of aberrant protein synthesis in FSHD
Aug 6, 2020
Dr. Jagannathan provides an update on her lab's progress so far on aberrant RNA.
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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Jul 23, 2020
A grant to Drs. Statland and Tawil in support of a multi-year study.
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Improved, accessible, and affordable FSHD diagnostic
Jul 23, 2020
Grant to support the Jones lab in validating a proposed FSHD diagnostic.
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A Low-Cost FSHD Diagnostic
Jul 16, 2020
Dr. Jones explains his lab's work on a low-cost FSHD diagnostic.
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Wedgwood Art Festival Goes Virtual
Jun 24, 2020
Do you miss seeing your favorite artists this summer?
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World FSHD Day Newsletter
Jun 20, 2020
United for a Cure.
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World FSHD Day
Jun 19, 2020
Dyne has produced a wonderful "Fireside" video for World FSHD Day.
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Progress Update: Analysis of histone demethylases as candidate targets for FSHD therapeutics
Jun 12, 2020
Dr. Hamm provides a final update to her Wellstone Fellowship project.
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Progress Update: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
Jun 11, 2020
Dr. Tawil provides an update on extended genetic testing for current and new patients in the National Registry.
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In Your Own Words
Jun 3, 2020
In celebration of World FSHD Day and in support of the upcoming Voice of the Patient Forum, Molly White of Dyne Therapeutics invites anyone living with FSHD to describe what would be a meaningful benefit from a successful therapy.
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Progress Update: Regulation and activity of the DUX4 transcription factor
May 20, 2020
Dr. Tapscott provides an update on his multi-year grant.
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Progress Update: Antisense Oligonucleotide – Antibody Conjugates to Treat FSHD
May 20, 2020
Dr. Marusak provides an update on progress so far.
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Dyne Therapeutics Accelerates Programs in FSHD
May 19, 2020
Dyne to evaluate therapies targeting genetic cause of FSHD under agreement with international research organization University of Mons
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Fulcrum Therapeutics Update on ReDUX4 Study
May 13, 2020
Fulcrum amends their Phase 2b trial, ReDUX4, to extend the trial from 24 to 48 weeks, adds an interim analysis for subjects who underwent their 16-week biopsy as originally planned, and adds a 36-week biopsy for patients who cannot undergo their 16-week biopsy.
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A Message of Hope and Perseverance from Chris Carrino
Apr 26, 2020
Those living with FSHD know firsthand what it's like to see the world through a changing lens. Recently, Chris Carrino shared some words of encouragement on the Brooklyn Nets website and social media outlets.