Search Results
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Dyne Therapeutics - World FSHD Day Panel Discussion
Jun 19, 2021, 2:18 PM
Panel discussion video with various stakeholders lead by Dyne Therapeutics.
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Voice of the Patient Report
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.
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21 dresses and a little hope
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.
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In Your Own Words
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.
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Voice of the Patient Forum for Drug Development
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.
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World FSHD Day
Jun 4, 2019, 2:19 PM
World FSHD Awareness Day.
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Where We Are
Jun 25, 2018, 1:30 PM
Fabiola Bertinotti provides an update on Jaya, who spoke at the 2018 Annual Auction.
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Strength, Responsibility and Progress
Jun 20, 2018, 3:00 AM
Dave Lukas describes his transformation into an advocate for those with FSHD and participation in clinical trials.
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World FSHD Day
Jun 15, 2018, 1:00 AM
World FSHD Awareness Day.
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Getting the Kids Back on the Playground
Apr 10, 2018, 10:13 PM
Text of Lukas Kostka speech given at January Auction.
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From Passive to Active
Mar 19, 2018, 10:08 PM
ENMC 25th anniversary summit - The Patient Role in Shared Decision Making.
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Tips for Air Travel with a Power Wheelchair
Sep 26, 2017, 7:32 PM
Howard Chabner addresses issues of air travel with a power wheelchair.
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George & Lynn
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.
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Medical Equipment, Access Solutions and Respiratory Therapy
Feb 28, 2017, 2:06 PM
Howard Chabner updates 2013 memo on recommendations for various types of medical and mobility equipment.
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AccessMap Routing Tool
Feb 8, 2017, 1:45 PM
A tool under development at the UW to provide routing information for someone with limited mobility.
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FSHD Respiratory Issues
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.
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Commonality of Pain in DM & FSHD
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.
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World FSHD Awareness Day
May 16, 2016, 4:28 PM
The first ever World FSHD Awareness Day.
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Western Washington FSH community meeting
Jul 11, 2015, 11:36 AM
The next Western Washington FSH Community meeting is July 25.
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Friends Featured in Kirkland Living Magazine
Dec 28, 2014, 12:35 PM
Friends of FSH Research will be featured in the upcoming issue of Kirkland Living Magazine.
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FSHD advocate and para-athlete visits “Good Morning America”
Dec 23, 2014, 12:23 PM
Carlos Romero paid a visit to the folks at Good Morning America on Tuesday Morning.
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FSH, l’autre myopathie
Mar 28, 2013, 4:26 PM
A French language presentation of excerpts from the exposition "FSH, the other myopathy" in March and April.