Jun 19, 2021, 2:18 PM
Panel discussion video with various stakeholders lead by Dyne Therapeutics.
Nov 15, 2020, 12:56 PM
In June 2020 Friends of FSH Research partnered with the FSHD Society in an externally led patient-focused drug development meeting. The report is now available.
Nov 9, 2020, 2:12 PM
We are living in some pretty challenging times right now. COVID has made everyone rethink everything we do including the things we take for granted every day.
Jun 3, 2020, 4:07 PM
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.
Jan 9, 2020, 10:37 AM
The Friends of FSH Research is partnering with the FSHD Society on a landmark Voice of the Patient Forum for Drug Development.
Jun 4, 2019, 2:19 PM
World FSHD Awareness Day.
Jun 25, 2018, 1:30 PM
Fabiola Bertinotti provides an update on Jaya, who spoke at the 2018 Annual Auction.
Jun 20, 2018, 3:00 AM
Dave Lukas describes his transformation into an advocate for those with FSHD and participation in clinical trials.
Jun 15, 2018, 1:00 AM
World FSHD Awareness Day.
Apr 10, 2018, 10:13 PM
Text of Lukas Kostka speech given at January Auction.
Mar 19, 2018, 10:08 PM
ENMC 25th anniversary summit - The Patient Role in Shared Decision Making.
Sep 26, 2017, 7:32 PM
Howard Chabner addresses issues of air travel with a power wheelchair.
Sep 10, 2017, 6:31 PM
George & Lynn's commitment to Friends of FSH Research is a natural fit due to their common goal of basic research.
Feb 28, 2017, 2:06 PM
Howard Chabner updates 2013 memo on recommendations for various types of medical and mobility equipment.
Feb 8, 2017, 1:45 PM
A tool under development at the UW to provide routing information for someone with limited mobility.
Dec 26, 2016, 12:50 PM
Interview with Dr. Nicholas S. Hill, Chief of the Pulmonary, Critical Care, and Sleep Division at Tufts University School of Medicine.
Aug 26, 2016, 9:32 AM
258 members of the URMC Registry completed a survey last year. Results indicate that 79% of FSHD patients and 68% of DM patients experience pain.
May 16, 2016, 4:28 PM
The first ever World FSHD Awareness Day.
Jul 11, 2015, 11:36 AM
The next Western Washington FSH Community meeting is July 25.
Dec 28, 2014, 12:35 PM
Friends of FSH Research will be featured in the upcoming issue of Kirkland Living Magazine.
Dec 23, 2014, 12:23 PM
Carlos Romero paid a visit to the folks at Good Morning America on Tuesday Morning.
Mar 28, 2013, 4:26 PM
A French language presentation of excerpts from the exposition "FSH, the other myopathy" in March and April.
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