Search Results
Aug 4, 2024, 11:03 AM
MOVE FSHD study update.
Jul 11, 2024, 12:27 PM
Patient study update by Dr. Kyba after a Covid hiatus.
Feb 17, 2024, 5:59 PM
An update on the MOVE FSHD study.
Oct 10, 2023, 5:23 PM
Latest update from the MOVE grant.
Mar 23, 2023, 4:52 PM
FlexFund grant on support for continued development of low-cost FSHD diagnostic test.
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.
Aug 23, 2022, 4:51 PM
FSHD Clinical Trial Research Network Quarterly Newsletter - Summer 2022
Aug 4, 2022, 2:34 PM
Dr. Sanchez provides a final update on his novel tongue EIM assessment device.
Aug 4, 2022, 12:37 PM
Update on MOVE FSHD study.
Mar 3, 2022, 9:17 AM
Fulcrum Therapeutics, Inc. announced its plans to initiate REACH, a Phase 3 clinical trial of losmapimod in people with FSHD, in the second quarter of 2022.
Jan 25, 2022, 2:26 PM
Dr. Statland provides an 18 month update on the current state of CTRN.
Nov 22, 2021, 12:27 PM
Dr. Sanchez provides an update on the initial phase of his clinical trial
Jul 15, 2021, 3:57 PM
Dr. Statland provides a second update on the MOVE FSHD Study.
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.
Jun 4, 2021, 10:58 AM
Dr. Tawil provides an update to his multi-year grant.
May 25, 2021, 9:45 AM
Dr. Wang provides a final report on the FlexFund grant, which supported multiple clinical trials at the University of Washington.
May 18, 2021, 9:14 AM
Dr. Jones provides a final update on the funding provided for low-cost test diagnostic.
May 7, 2021, 4:37 PM
Dr. Tawil provides a final progress update.
Apr 17, 2021, 4:38 PM
Progress update from Dr. Johnstone regarding termination of the project.
Mar 16, 2021, 2:35 PM
Dr. Kyba provides an update on his clinical study reimbursement expenses.
Mar 6, 2021, 8:56 AM
Dr. Statland provides an update to the MOVE FSHD study.
Oct 14, 2020, 11:27 AM
Dr. Wang provides an update on the various studies supported by Friends at the UW.
Sep 26, 2020, 2:26 PM
Researchers at the University of Washington are investigating new instruments to measure the strength of the oral muscles in FSHD.
Sep 25, 2020, 3:19 PM
Researchers at the University of Washington are investigating new instruments to measure the strength of the oral muscles in FSHD.
Sep 15, 2020, 9:28 AM
Dr. Peter Jones provides a 6 month update on validating an affordable epigenetic diagnostic. The validation could be helped by more volunteers.
Sep 14, 2020, 4:48 PM
Dr. Rabi Tawil provides an update on the expansion of the ReSolve Study to include two European Sites.
Jun 11, 2020, 10:08 AM
Dr. Tawil provides an update on extended genetic testing for current and new patients in the National Registry.
Apr 2, 2020, 4:08 PM
As a result of the suspension of clinical-trial activity by a number of the Company’s clinical trial sites stemming from the pandemic, the Company is currently assessing the impact to the ReDUX4 clinical trial.
Feb 3, 2020, 1:34 PM
Dr. Kyba provides a brief update on our help with recruiting study participants.
Jan 30, 2020, 8:58 AM
Fulcrum Therapeutics announced that the FDA has granted Orphan Drug Designation to losmapimod, a selective p38α/β mitogen activated protein kinase (MAPK) inhibitor.
Dec 15, 2019, 12:05 PM
Researchers at the University of Washington and Seattle Children’s Hospital are seeking volunteers for a study on FSHD.
Nov 6, 2019, 3:25 PM
Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD).
Aug 19, 2019, 11:14 AM
Fulcrum Therapeutics Announces Initiation of ReDUX4, a Phase 2b Clinical Trial of Losmapimod for FSHD.
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.
Aug 1, 2019, 12:08 PM
Dr. Tawil provides a brief update on the two CTRN European sites funded.
Jul 19, 2019, 2:28 PM
Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD).
May 15, 2019, 11:36 AM
Through your generosity, and with matching funds, we raised $20K to help fund Evaluators for the FSHD CTRN.
Apr 23, 2019, 5:20 PM
Fulcrum Therapeutics today announced an exclusive worldwide license agreement with GlaxoSmithKline for development and commercialization of the investigational drug losmapimod.
Apr 13, 2019, 3:48 PM
New quarterly publication for the FSHD Clinical Trial Research Network.
Apr 1, 2019, 4:12 PM
Video by Dr. Leo Wang about the ReSolve Study - Clinical Trial Preparedness to Solve Barriers to Drug Development in FSHD.
Nov 14, 2018, 11:01 AM
Update from Dr. Wang on his clinical study.
Nov 5, 2018, 5:19 PM
Dr. Tawil provides a brief update on the two CTRN European sites funded.
Aug 1, 2018, 1:00 AM
Dr. Tawil discusses his historical relationship with FSHD and the future of potential therapies.
Jun 20, 2018, 3:00 AM
Dave Lukas describes his transformation into an advocate for those with FSHD and participation in clinical trials.
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,
May 30, 2018, 10:18 AM
Exciting new research being funded both by your investments and through our co-funding partners.
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.
Jan 17, 2018, 9:47 PM
A publication from Scott Harper's lab reporting on the use of an AAV vector to test the safety of two miRNAs in silencing DUX4.
Dec 31, 2017, 8:55 PM
Initial progress update provided by Premi Haynes PhD.
May 30, 2017, 6:11 PM
Dr. Wang provides a progress update on his clinical study.
Feb 9, 2017, 2:00 PM
The University of Washington is seeking individuals to participate in a research study aimed at identifying biomarkers of FSHD.
Dec 20, 2016, 12:17 PM
Press release from aTyr.
Nov 21, 2016, 11:39 AM
Dr. Rabi Tawil discusses the National Registry based in Rochester, NY.
Oct 27, 2016, 10:00 AM
Webcast to be held Oct 28, 2016 at 10:00 a.m. EDT with Dr. Statland. Archive available on website.
Oct 26, 2016, 9:55 AM
A proposal to study the histopathological features of muscle in a large biobank from FSHD patients and their first degree family members.
Oct 6, 2016, 9:46 AM
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.
May 23, 2016, 4:44 PM
Report of FSHD Summit held in Portland, Oregon, February 29 to March 1 of 2016.
Apr 8, 2016, 2:39 PM
aTyr pharma has encouraging news regarding a possible treatment for FSHD using a novel protein-based biologic drug.
Feb 23, 2016, 2:34 PM
FSHD clinical research project needs patients to complete study
Apr 20, 2015, 3:31 PM
Researchers at the University of Washington and Seattle Children's Hospital are seeking volunteers for a study on FSHD.
Jul 25, 2010, 3:01 PM
Clinical study participants needed.
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