Search Results
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Update: Motor Outcomes to Validate Evaluations in FSHD
Feb 17, 2024, 5:59 PM
An update on the MOVE FSHD study.
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Update: Motor Outcomes to Validate Evaluations in FSHD
Oct 10, 2023, 5:23 PM
Latest update from the MOVE grant.
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Update: Motor Outcomes to Validate Evaluations in FSHD
Feb 5, 2023, 12:03 PM
This large study will be a big achievement in the FSHD community, a reality that has been made possible by the support from Friends of FSH Research.
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Clinical trial network aims to speeding up development of effective treatments for rare type of muscular dystrophy
Jun 18, 2021, 3:34 PM
Article published by University of Kansas Medical Center provides insight into work by Dr. Jeffrey Statland, partially supported through multiple grants from Friends of FSH Research.
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Progress Update: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
Jun 4, 2021, 10:58 AM
Dr. Tawil provides an update to his multi-year grant.
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Progress Update: CTRN International Sites
May 7, 2021, 4:37 PM
Dr. Tawil provides a final progress update.
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Progress Update: CTRN International Sites
Sep 14, 2020, 4:48 PM
Dr. Rabi Tawil provides an update on the expansion of the ReSolve Study to include two European Sites.
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Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD)
Jul 23, 2020, 4:22 PM
A grant to Drs. Statland and Tawil in support of a multi-year study.
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Progress Update: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
Jun 11, 2020, 10:08 AM
Dr. Tawil provides an update on extended genetic testing for current and new patients in the National Registry.
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CTRN ReSolve FSHD Update
Nov 6, 2019, 3:25 PM
Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD).
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Progress Update: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
Aug 5, 2019, 10:19 AM
Dr. Tawil provides an update on year three of his project to get genetic testing performed for those in the registry who do not have it, and thus create a larger viable pool for upcoming clinical trials.
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Progress Update: CTRN International Sites
Aug 1, 2019, 12:08 PM
Dr. Tawil provides a brief update on the two CTRN European sites funded.
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CTRN ReSolve FSHD Update
Jul 19, 2019, 2:28 PM
Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD).
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Progress Update: CTRN International Sites
Nov 5, 2018, 5:19 PM
Dr. Tawil provides a brief update on the two CTRN European sites funded.
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Ask the Expert with Dr. Rabi Tawil
Aug 1, 2018, 1:00 AM
Dr. Tawil discusses his historical relationship with FSHD and the future of potential therapies.
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Progress Update: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
Jul 5, 2018, 11:47 AM
Dr. Tawil provides an update on year two of his project to get genetic testing performed for those in the registry who do not have it, and thus create a larger viable pool for upcoming therapeutic trials.
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Genea Biocells Announces FDA Orphan Drug Designation for GBC0905 for the Treatment of FSHD
Jun 1, 2018, 7:48 AM
Genea Biocells announced that it has been granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for its therapeutic candidate, GBC0905,
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Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD
May 25, 2018, 11:43 AM
As multiple drug companies pursue treatments for FSHD, there is an urgent need to define the clinical trial strategies which will hasten drug development, including creating disease-relevant outcome measures and optimizing inclusion criteria. This proposal will develop two new outcome measures and optimize eligibility criteria by testing 160 patients in 7 sites over a period of 18 months.
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Progress Update: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
May 30, 2017, 6:07 PM
Progress update from Dr. Tawil on making the National Registry more useful for research by providing genetic testing.
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FSHD Registry
Nov 21, 2016, 11:39 AM
Dr. Rabi Tawil discusses the National Registry based in Rochester, NY.
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Progress Update: Identification of Serum Biomarkers for Measurement of FSHD Progression
Feb 3, 2015, 9:07 AM
Progress update from Drs. Miller and Tawil.
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Friends of FSH Research and FSHD Canada Fund Two New Projects
Jul 16, 2014, 9:42 PM
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FSHD Muscle Nuclei Poised for DUX4 Expression
Oct 29, 2010, 4:14 PM
An international research consortium shows that FSHD muscle nuclei are poised for expression of the toxic DUX4 protein.
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Dr. Rabi Tawil on the Challenges of Unraveling the Genetics of FSHD
Oct 21, 2010, 3:58 PM
University of Rochester published interview with Dr. Rabi Tawil.
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Identification of DNA Region Necessary for FSHD
Sep 20, 2010, 3:45 PM
An international collaboration identifies a region of DNA necessary for FSHD and focuses attention on DUX4 as the cause of muscle deterioration.
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$6.3 Million Dollar Grant for FSH Research — The Pathogenesis of FSHD
Jun 26, 2010, 2:46 PM
Five-year NIH grant to a consortium of FSHD research labs.
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Common epigenetic changes of D4Z4 in contraction-dependent and contraction-independent FSHD
Jun 2, 2009, 1:58 PM
Facioscapulohumeral muscular dystrophy (FSHD), caused by partial deletion of the D4Z4 macrosatellite repeat on chromosome 4q, has a complex genetic and epigenetic etiology. To develop FSHD, D4Z4 contraction needs to occur on a specific genetic background. Only contractions associated with the 4qA161 haplotype cause FSHD.
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RNA transcripts, miRNA-sized fragments and proteins produced from D4Z4 units: new candidates for the pathophysiology of FSHD
Jun 1, 2009, 1:27 PM
Several genes have been examined as candidates for causing FSHD, including the DUX4 homeobox gene in the D4Z4 repeat, but none have been definitively shown to cause the disease, or has the full extent of transcripts from the D4Z4 region been carefully characterized.
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Five-Year NIH Grant for FSH Research
Apr 15, 2008, 11:46 AM
$6.3 Million Dollar Grant for FSH Research — The Pathogenesis of FSHD.