Search Results
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Jun 20, 2024, 6:39 PM
FSHD Straight Talk: 2024 World FSHD Special!
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May 30, 2024, 1:24 PM
First year progress.
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May 18, 2024, 5:30 PM
The progress report highlights advancements in constructing an MRI data-lake for studying Facioscapulohumeral Muscular Dystrophy (FSHD) using AI segmentation techniques.
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May 18, 2024, 5:18 PM
Finalizing biopsy fiducial details to ensure correspondence between histology, DUX4, and MRI data, with atlas generation to begin in earnest in the summer of 2024.
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May 16, 2024, 9:09 AM
Developing a comprehensive understanding of DUX4 gene regulation.
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Apr 23, 2024, 11:07 AM
Understanding how FSHD cells differ in autophagy and mitophagy will allow one to identify the key mechanisms involved in this metabolic dysregulation of the disease and identify potential therapeutics. Dr. Heher provides a 6-month update on his work so far.
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Mar 17, 2024, 11:20 AM
Dr. Bugiardini provides the first update to comprehensively understanding global genetic diversity in FSHD.
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Feb 17, 2024, 5:59 PM
An update on the MOVE FSHD study.
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Feb 17, 2024, 5:42 PM
Dr. Heher's final report on very interesting data regarding oxidative stress.
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Feb 1, 2024, 11:32 AM
Dr. Chamberlain is honored by the MDA with the 2024 Legacy Award for Achievement in Research.
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Jan 30, 2024, 5:09 PM
Dr. Arends provides an update to current work.
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Oct 10, 2023, 5:23 PM
Latest update from the MOVE grant.
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Sep 19, 2023, 12:25 PM
We have developed a computational cellular model of FSHD, based on a mechanism where expression of DUX4 (currently the main target for FSHD therapy) leads to muscle cell death.
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Jul 5, 2023, 11:53 AM
Initial progress update.
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Jul 5, 2023, 11:04 AM
Friends of FSH Research continues support of local artists, who in turn have donated much to the annual Auction. Live music returns to the Wedgwood Art Festival this year! Two headlining bands and a great lineup of local musicians in the Hellbent Brewery beer garden.
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Apr 6, 2023, 12:24 PM
Final update by Dr. Ozes of Altay Therapeutics.
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Mar 23, 2023, 4:52 PM
FlexFund grant on support for continued development of low-cost FSHD diagnostic test.
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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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Dec 17, 2022, 1:22 PM
New Publication from Grant Recipient: Professor Zammit at King's College
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Nov 14, 2022, 7:00 AM
Here's YOUR chance to attend a Seahawks game and support FSHD research at the same time!
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Oct 31, 2022, 3:24 PM
A thank you letter from Dr. Bloch.
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Oct 28, 2022, 4:25 PM
Final report of year one.
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Oct 16, 2022, 3:27 PM
Friends of FSH Research is calling for grant proposals now for final submission by the end of January 2023 with funding in March 2023.
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Oct 11, 2022, 4:12 PM
Final update by Dr. Bosnakovski.
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Oct 4, 2022, 9:10 AM
The mission of Friends of FSH Research is to accelerate research that will help find a treatment or cure for FSH muscular dystrophy. This strategy sometimes requires us to fund unique, novel and potentially risky research pilot projects.
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Aug 23, 2022, 4:51 PM
FSHD Clinical Trial Research Network Quarterly Newsletter - Summer 2022
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Aug 23, 2022, 9:38 AM
CMS has accepted a formal request to consider both the benefit category and coverage for seat elevation systems and standing systems.
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Aug 4, 2022, 2:34 PM
Dr. Sanchez provides a final update on his novel tongue EIM assessment device.
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Aug 4, 2022, 1:51 PM
Final udpate from Dr Guo on the generation of a craniofacial muscle model of FSHD from iPSCs.
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Aug 4, 2022, 12:47 PM
Dr. Ozes provides a brief update on progress in testing quite novel DUX4 inhibitors.
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Aug 4, 2022, 12:37 PM
Update on MOVE FSHD study.
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May 13, 2022, 11:54 PM
Final report from Dr. Tapscott on his multi-year grant program.
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May 8, 2022, 9:06 PM
Dr. Jagannathan provides a final research report.
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May 5, 2022, 3:59 PM
Final report from Dr. Rajanikanth Vangipurapu.
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Mar 23, 2022, 6:30 PM
Video of 2022 Research Update Meeting.
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Mar 5, 2022, 7:41 PM
Rampathon 2022 - Building wheelchair access ramps in King and Snohomish Counties for free.
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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.
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Mar 1, 2022, 11:22 AM
Dr. Hiramuki provides a final project update.
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Feb 25, 2022, 11:45 AM
Buy spring flowers for your garden and support FSHD research, where 50% of proceeds come directly back to our organization.
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Feb 7, 2022, 3:50 PM
Our Annual Auction is online this year
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Feb 7, 2022, 3:27 PM
The Wedgwood Art Festival is back as an in-person, 2-day event, supporting and celebrating arts in the Wedgwood community with a focus on NW artists and craftspeople.
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Feb 7, 2022, 1:05 PM
Annual research update meeting information.
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Feb 7, 2022, 12:46 PM
Dr. Heher provides an update on his innovative mitochondria-targeted antioxidants research.
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Jan 25, 2022, 2:26 PM
Dr. Statland provides an 18 month update on the current state of CTRN.
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Dec 8, 2021, 3:38 PM
Dr. Bosnakovski provides an initial update on his project.
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Nov 22, 2021, 12:27 PM
Dr. Sanchez provides an update on the initial phase of his clinical trial
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Nov 20, 2021, 10:55 AM
Dr. Harper provides a final update on grant progress.
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Nov 20, 2021, 10:22 AM
Dr. Marusak provides an interim update on grant progress.
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Nov 13, 2021, 12:14 PM
Dr. Bloch provides a final report on progress.
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Oct 14, 2021, 8:05 PM
Dr. Saad provides a final update on his grant progress.
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Sep 24, 2021, 4:38 PM
Dr. Ozes provides an update to his successful work in finding a potential small molecule inhibitor for DUX4.
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Sep 11, 2021, 12:54 PM
Dr. Vangipurapu provides an update on his research.
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Aug 9, 2021, 12:19 PM
Dr. Jagannathan provides an update on research progress.
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Jul 15, 2021, 3:57 PM
Dr. Statland provides a second update on the MOVE FSHD Study.
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Jun 19, 2021, 2:18 PM
Panel discussion video with various stakeholders lead by Dyne Therapeutics.
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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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Jun 18, 2021, 2:23 PM
World FSHD Awareness Day 202, featuring the Jones Lab free FSHD test diagnostic.
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Jun 10, 2021, 10:01 AM
Dr. Lek provides a final update to her screening grant.
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Jun 4, 2021, 10:58 AM
Dr. Tawil provides an update to his multi-year grant.
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Jun 4, 2021, 10:33 AM
Dr. Tapscott provides an update to his multi-year grant.
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May 28, 2021, 11:09 AM
Dr. Hamm provides a final report on work performed during her Friends of FSH Research Fellowship.
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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.
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May 18, 2021, 9:14 AM
Dr. Jones provides a final update on the funding provided for low-cost test diagnostic.
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May 7, 2021, 4:37 PM
Dr. Tawil provides a final progress update.
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May 3, 2021, 4:00 AM
The American Society of Gene & Cell Therapy announces results of its vote on open positions on the Board of Directors, naming Dr. Chamberlain VP.
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Apr 20, 2021, 7:53 PM
Dr. Afrooz Rashnonejad provides a final update on her project.
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Apr 20, 2021, 1:09 PM
Dr. Rajanikanth Vangipurapu provides an update on the first year of progress.
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Apr 19, 2021, 5:12 PM
Give BIG 2021
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Apr 18, 2021, 10:57 AM
Dr. Harper provides an update on his project.
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Apr 18, 2021, 10:06 AM
Darina Šikrová provides a final update on her project.
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Apr 17, 2021, 4:38 PM
Progress update from Dr. Johnstone regarding termination of the project.
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Mar 16, 2021, 2:35 PM
Dr. Kyba provides an update on his clinical study reimbursement expenses.
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Mar 16, 2021, 2:16 PM
Dr. Hamm provides an update on the molecular mechanisms that occur in FSHD.
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Mar 6, 2021, 9:18 AM
Dr Jagannathan provides an update on her lab's research.
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Mar 6, 2021, 8:56 AM
Dr. Statland provides an update to the MOVE FSHD study.
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Mar 2, 2021, 10:59 AM
Friends of FSH Research hosted our annual FSHD Research Update Meeting on Saturday February 27, 2021. Recording now available.
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Feb 23, 2021, 7:04 PM
Friends of FSH Research is excited to host our annual FSHD Research Update Meeting. Logo T-Shirt now available.
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Feb 1, 2021, 7:53 PM
Dr. Saad provides a 6-month update on his work.
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Dec 1, 2020, 10:36 AM
Dr. Marusak provides a one-year update on their progress.
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Nov 21, 2020, 9:52 AM
Dr. Tapscott and provides an update on his multi-year grant.
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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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Nov 15, 2020, 11:57 AM
Dr. Šikrová provides an update on grant progress.
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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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Nov 1, 2020, 12:10 PM
A call for research proposals.
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Oct 25, 2020, 5:09 PM
Dr. Rashnonejad provides an update on a potential therapeutic.
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Oct 14, 2020, 1:27 PM
Dr. Bloch provides an update on progress investigating a potential biomarker for FSHD.
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Oct 14, 2020, 11:27 AM
Dr. Wang provides an update on the various studies supported by Friends at the UW.
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Oct 6, 2020, 11:43 AM
Dr. Lek provides an update on progress establishing a pipeline for testing the therapeutic potential of the drugs to reduce DUX4 toxicity, starting with everolimus.
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Sep 28, 2020, 9:26 AM
Win a special UW mask at the Mask-r-Aid Ball.
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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.
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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.
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Sep 24, 2020, 4:56 PM
Board member Dr. Premi Haynes interviews grant recipient Dr. Sujatha Jagannathan.
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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.
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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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Sep 10, 2020, 9:27 AM
Dr. Vangipurapu from the Sverdrup Lab provides a progress update.
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Aug 8, 2020, 7:53 PM
Michelle Li of KING5 on Mask-r-Aid Ball.
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Aug 6, 2020, 7:51 AM
Dr. Jagannathan provides an update on her lab's progress so far on aberrant RNA.
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Jul 23, 2020, 4:22 PM
A grant to Drs. Statland and Tawil in support of a multi-year study.
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Jul 23, 2020, 4:10 PM
Grant to support the Jones lab in validating a proposed FSHD diagnostic.
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Jul 16, 2020, 11:57 AM
Dr. Jones explains his lab's work on a low-cost FSHD diagnostic.
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Jun 24, 2020, 4:39 PM
Do you miss seeing your favorite artists this summer?
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Jun 20, 2020, 12:39 PM
United for a Cure.
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Jun 19, 2020, 5:16 PM
Dyne has produced a wonderful "Fireside" video for World FSHD Day.
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Jun 12, 2020, 1:32 PM
Dr. Hamm provides a final update to her Wellstone Fellowship project.
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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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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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May 20, 2020, 3:24 PM
Dr. Tapscott provides an update on his multi-year grant.
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May 20, 2020, 2:41 PM
Dr. Marusak provides an update on progress so far.
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May 19, 2020, 2:22 PM
Dyne to evaluate therapies targeting genetic cause of FSHD under agreement with international research organization University of Mons
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May 13, 2020, 1:46 PM
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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Apr 26, 2020, 11:00 AM
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.
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Apr 17, 2020, 10:02 AM
Darina Šikrová provides a progress update of her work on using a novel genome editing tool to target DUX4.
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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.
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Mar 26, 2020, 1:38 PM
GiveBIG for Seattle. Friends of FSH Research is suggesting you donate to other non-profits for GiveBIG this year.
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Mar 10, 2020, 1:46 PM
Latest progress from Yosuke Hiramuki.
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Feb 7, 2020, 2:00 PM
Our latest call for research proposals.
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Feb 3, 2020, 1:34 PM
Dr. Kyba provides a brief update on our help with recruiting study participants.
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Feb 1, 2020, 4:27 PM
Slideshow on molecular mechanisms of DUX4 which was presented at the Wellstone Research Update 2020 by Danielle Hamm PhD.
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Feb 1, 2020, 3:58 PM
Slideshow on aberrant translation which was presented at the Wellstone Research Update 2020 by Sujatha Jagannathan PhD.
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Jan 31, 2020, 4:05 PM
Slideshow on epigenetics which was presented at the Wellstone Research Update 2020 by Peter Jones PhD.
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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.
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Jan 28, 2020, 1:31 PM
Rashnonajad provides the initial progress update showing efficiently reduced DUX4 mRNA and consequently DUX4 protein in FSHD cells.
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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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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.
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Dec 9, 2019, 3:03 PM
Sachiko Homma provides the final update on DUX4's apparent affect on muscle degradation.
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Nov 25, 2019, 10:32 AM
Wellstone FSHD Fellowship recipient Danielle Hamm provides an update on the first six months of progress.
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Nov 24, 2019, 7:35 PM
The funding provided by Friends of FSH Research and the Carrino Foundation has supported Dr. Amy Campbell, a dedicated professional highly skilled in FSHD research who oversees the completion of high-impact studies on FSHD and provides scientific and technical oversight for graduate students, postdoctoral fellows, and collaborators seeking to initiate and/or advance projects in FSHD.
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Nov 17, 2019, 12:45 PM
Join us at the Annual Auction. Good food, good company, good time.
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Nov 6, 2019, 3:25 PM
Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD).
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Nov 5, 2019, 3:02 PM
A discussion on recent research advances at the Hyatt prior to the Annual Auction: Rainier Room @ 1-4pm. RSVP. Agenda posted here as well.
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Nov 4, 2019, 2:21 PM
Dr. Pakula provides her final update on this research project.
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Nov 4, 2019, 10:39 AM
Wine tasting and hors d'oeuvres at Elevation Winery in Woodinville.RSVP today via evite or email.
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Nov 3, 2019, 2:40 PM
Enjoy sips, sweets and making your own custom jewelry at the Color Bar. 20% of sales benefit FSHD research.
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Oct 24, 2019, 4:35 PM
Yosuke Hiramuki provides an update on his novel mouse model.
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Oct 24, 2019, 3:41 PM
Darina Šikrová provides a progress update of her work on using a novel genome editing tool to target DUX4.
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Sep 29, 2019, 6:37 PM
Final progress update.
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Aug 19, 2019, 11:14 AM
Fulcrum Therapeutics Announces Initiation of ReDUX4, a Phase 2b Clinical Trial of Losmapimod for FSHD.
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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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Aug 2, 2019, 10:18 AM
Travel reports from recipients of travel grants for the 2019 FSH Society International Research Congress.
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Aug 1, 2019, 5:52 PM
Sujatha Jagannathan provides a brief final summary of work on her research.
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Aug 1, 2019, 12:24 PM
Yi-Wen Chen provides a final summary of her research activities.
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Aug 1, 2019, 12:08 PM
Dr. Tawil provides a brief update on the two CTRN European sites funded.
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Jul 26, 2019, 4:17 PM
Recipient of the FSH Fellowship award.
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Jul 19, 2019, 2:28 PM
Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD (ReSolve FSHD).
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Jul 18, 2019, 8:43 PM
DUX4 suppresses MHC Class I to promote cancer immune evasion and resistance to checkpoint blockade.
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Jun 17, 2019, 12:27 PM
Friends of FSH Research is pleased to announce our next request for grant proposals to help the advancement of FSHD research.
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Jun 10, 2019, 11:54 AM
Visit us and some of the artists who support our annual auction.
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Jun 10, 2019, 10:22 AM
The 2nd Annual Walk & Roll to Cure FSHD in beautiful Bellevue, WA!
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Jun 5, 2019, 12:32 PM
Dr. Bloch provides a final update on his xenograft mouse model project.
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Jun 4, 2019, 2:19 PM
World FSHD Awareness Day.
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May 29, 2019, 8:16 AM
The funding provided by Friends of FSH Research and the Carrino Foundation has supported Dr. Amy Campbell, a dedicated professional highly skilled in FSHD research who oversees the completion of high-impact studies on FSHD and provides scientific and technical oversight for graduate students, postdoctoral fellows, and collaborators seeking to initiate and/or advance projects in FSHD.
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May 15, 2019, 11:36 AM
Through your generosity, and with matching funds, we raised $20K to help fund Evaluators for the FSHD CTRN.
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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.
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Apr 17, 2019, 10:55 AM
All 2019 GiveBIG donations will be earmarked for the training of clinical evaluators for future FSHD drug trials.
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Apr 13, 2019, 3:48 PM
New quarterly publication for the FSHD Clinical Trial Research Network.
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Apr 13, 2019, 2:52 PM
Dr. Pakula provides an update on her research.
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Apr 3, 2019, 2:55 PM
Prof. Dr. Arend Heerschap provides an update on his research to determine in which muscles and where in a muscle DUX4 starts to be harmful.
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Apr 2, 2019, 11:09 AM
$350,000 in new grants recently funded.
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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.
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Feb 27, 2019, 11:47 AM
Sachiko Homma provides an update on her investigation into DUX4-induced muscle atrophy.
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Feb 15, 2019, 11:32 AM
Dr. Kyba's final update on investigating what exactly is happening to muscles as FSHD progresses.
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Jan 15, 2019, 9:05 AM
It's the Annual Auction of course! Tickets and special hotel rate still available.
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Jan 10, 2019, 5:55 PM
And update on FSHD research from the Wellstone Center on the afternoon before the Annual Auction at the Hyatt Regency.
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Dec 30, 2018, 1:54 PM
Every Sunday for the entire month of January Flatstick Pub in Kirkland will be promoting Friends of FSH Research.
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Dec 27, 2018, 11:06 AM
Jocelyn Eidahl provides a progress update on the past 6 months of investigating the role of post-translational modification on FSHD protein DUX4.
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Dec 18, 2018, 8:36 PM
Yi-Wen Chen provides a summary of the first six months of research activities.
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Dec 17, 2018, 10:18 AM
Article by the University of Minnesota discussing the results of a projects funded in part by Friends of FSH Research.
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Dec 3, 2018, 10:07 AM
Amy Campbell provides a brief update of her work overseeing lab personnel, publications, etc.
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Nov 29, 2018, 4:44 PM
Sujatha Jagannathan provides a brief summary of the first six months of work on her research.
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Nov 20, 2018, 8:22 AM
Dr. Pakula provides a progress update on characterizing single DUX4 expressing cells.
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Nov 16, 2018, 9:43 AM
Progress update from Dr. Kyba.
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Nov 14, 2018, 11:01 AM
Update from Dr. Wang on his clinical study.
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Nov 5, 2018, 5:19 PM
Dr. Tawil provides a brief update on the two CTRN European sites funded.
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Oct 5, 2018, 1:00 AM
Our latest Request For Proposals is now open for submissions.
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Aug 31, 2018, 12:01 PM
Fabiola Bertinotti writes about her week in Vienna as a member of the TREAT-NMD Advisory Committee for Therapeutics (TACT).
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Aug 1, 2018, 1:00 AM
Dr. Tawil discusses his historical relationship with FSHD and the future of potential therapies.
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Jul 31, 2018, 3:31 PM
Charles Emerson provides the final update on his recent study.
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Jul 17, 2018, 5:51 PM
Jocelyn Eidahl, Post-Doctoral Scientist at Nationwide Children’s Hospital provides a progress update.
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Jul 11, 2018, 4:35 PM
Reporting on worldwide funding of FSHD research.
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Jul 11, 2018, 9:34 AM
Yi-Wen Chen DMV PhD provides an update on investigating 3rd generation oligonucleotides.
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Jul 10, 2018, 7:42 PM
Michael Kyba's lab shows that functional skeletal muscle stem cells can be produced from mouse pluripotent stem cells without genetic modification through teratoma formation. As few as 40,000 teratoma-derived cells can regenerate 80% of total muscle volume, improve force generation, and mature into functional muscle stem cells in vivo.
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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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Jun 25, 2018, 1:30 PM
Fabiola Bertinotti provides an update on Jaya, who spoke at the 2018 Annual Auction.
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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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Jun 18, 2018, 9:59 AM
Summary of progress and presentations at the June 8-9 conference in Las Vegas.
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Jun 15, 2018, 1:44 AM
Grant recipient Premi Haynes discusses her work and interest in FSHD.
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Jun 15, 2018, 1:00 AM
World FSHD Awareness Day.
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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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May 30, 2018, 10:18 AM
Exciting new research being funded both by your investments and through our co-funding partners.
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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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May 25, 2018, 9:34 AM
Identification of several types of small noncoding RNAs including known microRNAs that are differentially expressed in FSHD2 muscle cells compared to control.
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Apr 15, 2018, 10:19 PM
Recent grant recipient Dr. Anna Pakula discusses her work.
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Apr 10, 2018, 10:13 PM
Text of Lukas Kostka speech given at January Auction.
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Mar 19, 2018, 10:08 PM
ENMC 25th anniversary summit - The Patient Role in Shared Decision Making.
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Feb 7, 2018, 10:03 PM
Spring 2018 Request for Research Proposals.
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Feb 1, 2018, 9:51 PM
Slide decks for Dr. Tapscott & Dr. Wang from the 27-Jan presentations.
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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.
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Jan 4, 2018, 9:05 PM
Annual Auction for FSHD. NEW RENTON LOCATION.
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Jan 1, 2018, 9:01 PM
Yi-Wen Chen DMV PhD provides an update on investigating 3rd generation oligonucleotides.
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Dec 31, 2017, 8:55 PM
Initial progress update provided by Premi Haynes PhD.
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Dec 16, 2017, 8:50 PM
Follow-on publication for previously funded grant.
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Dec 15, 2017, 8:44 PM
Jocelyn Eidahl, Post-Doctoral Scientist at Nationwide Children’s Hospital provides a progress update.
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Dec 14, 2017, 8:40 PM
Final progress update from Dr. Wagner.
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Nov 28, 2017, 8:32 PM
A discussion on recent research advances at the Hyatt prior to the Annual Auction.
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Nov 27, 2017, 8:27 PM
Have your Giving Tuesday donations matched through facebook and The Gates Foundation.
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Nov 21, 2017, 8:20 PM
Reporting on worldwide funding of FSHD research.
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Nov 20, 2017, 8:14 PM
Chronic Pain Has a Strong Impact on Quality of Life in FSHD.
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Nov 15, 2017, 8:09 PM
Dr. Bloch provides a brief update of his progress on a xenograft mouse model.
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Nov 10, 2017, 8:03 PM
Pre-Auction Table Captain/Sponsor Raffle
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Nov 8, 2017, 7:58 PM
Scott Q. Harper, PhD presents emerging molecular therapies for FSHD at FSHD Global event.
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Oct 26, 2017, 7:55 PM
Scott Q Harper, PhD reviews work at his lab at Nationwide Children's Hospital.
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Oct 26, 2017, 7:47 PM
Leo H Wang, MD PhD provides a layman's description of the clinical features and molecular biology of FSHD.
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Oct 10, 2017, 7:35 PM
Enjoy sips, sweets and making your own custom jewelry at the Color Bar. 20% of sales benefit FSHD research.
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Sep 26, 2017, 7:32 PM
Howard Chabner addresses issues of air travel with a power wheelchair.
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Sep 22, 2017, 7:25 PM
Amy Campbell and Fran Sverdrup have recently published a paper on initial results of a screen for compounds that inhibit DUX4 expression.
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Sep 10, 2017, 6:37 PM
Our latest RFP is now open.
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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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Jun 20, 2017, 6:28 PM
Washington State Governor Jay Inslee proclaims June 20th "FSHD Awareness Day."
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Jun 8, 2017, 6:25 PM
Since 2004 efforts have been made locally to infuse the Seattle research community with funds for FSHD research.
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Jun 8, 2017, 6:21 PM
Update from Dr. Wagner regarding her study of the histopathological features of FSHD affected muscle.
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May 30, 2017, 6:11 PM
Dr. Wang provides a progress update on his clinical study.
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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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May 18, 2017, 6:01 PM
Genea Biocells scientists presented work from four disease modeling projects.
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May 11, 2017, 5:56 PM
Thanks to you, we exceeded our Give BIG goal.
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May 10, 2017, 5:34 PM
GiveBIG campaign sponsored by the Seattle Foundation.
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May 1, 2017, 5:11 PM
4200 miles in 54 days to raise funds for research.
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May 1, 2017, 5:04 PM
Meet all the cyclists to cheer them on as they depart for their long journey.
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May 1, 2017, 4:59 PM
Meet Chris Carrino, Frank Carbone, and his team of cyclists at Postdoc Brewing.
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May 1, 2017, 4:28 PM
Join us as we recognize the researchers and their teams.
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May 1, 2017, 4:18 PM
Chris pushes past his time and physical constraints to run a foundation while continuing in his role as announcer for the Brooklyn Nets.
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May 1, 2017, 4:11 PM
Visit us and the artists who support our annual auction. Volunteers needed!
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May 1, 2017, 3:49 PM
GiveBIG campaign sponsored by the Seattle Foundation.
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May 1, 2017, 3:40 PM
Interview of Dr. Joel Chamberlain regarding her lab's work on therapy development.
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Apr 17, 2017, 3:36 PM
Kirkland Reporter article.
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Mar 24, 2017, 3:30 PM
Hideki Aihara PhD provides an update on his research into the structure of the Dux4 homeodomains in complex with DNA.
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Mar 24, 2017, 2:28 PM
Amanda provides brief visuals on where your funding has gone within the USA and Worldwide.
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Mar 11, 2017, 2:18 PM
Q&A by Fran Sverdrup, a Research Fellow at Center for World Health and Medicine.
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Mar 11, 2017, 2:13 PM
Review of a newly published paper from Davide Gabellini's group.
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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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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.
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Feb 8, 2017, 1:52 PM
Bonnie DeCaro-Monahan joins Friends of FSH Research.
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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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Jan 31, 2017, 1:11 PM
Update from Dr. Maura Parker on optimizing expansion of human muscle stem cells for transplant into mice.
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Jan 26, 2017, 12:59 PM
Latest RFP is now open.
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Dec 31, 2016, 12:55 PM
Update by Jong Won Lim, postdoctoral fellow.
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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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Dec 22, 2016, 12:28 PM
Updates and round-table discussion on FSHD on the morning of the January Auction.
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Dec 20, 2016, 12:17 PM
Press release from aTyr.
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Dec 19, 2016, 12:10 PM
UW Medicine geneticist and professor, Dr. Thomas Bird, demonstrates how genetic testing is utilized in the practice of neurology, including practical clinical examples.
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Dec 1, 2016, 11:51 AM
Lay summary for the ENMC Workshop.
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Nov 28, 2016, 11:48 AM
SAB member Bruce Wentworth provides a brief update from the FSH Society Patient Connect Conference.
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Nov 21, 2016, 11:39 AM
Dr. Rabi Tawil discusses the National Registry based in Rochester, NY.
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Nov 14, 2016, 10:40 AM
Final update for grant to Genea Biocells.
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Nov 7, 2016, 10:17 AM
FSHD funding overview compiled by Wouter Suurmond of Facio Therapies BV.
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Oct 28, 2016, 10:09 AM
The first application for this technology is FSHD disease modelling and drug discovery.
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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.
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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.
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Oct 25, 2016, 9:51 AM
Development of an in vitro model of FSHD innate immunity.
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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.
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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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Aug 20, 2016, 9:22 AM
Small but critical grant awarded two key stakeholders in the push for FSHD trial readiness.
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Jul 18, 2016, 6:40 PM
Your hashtags earn money for Friends of FSH Research organization
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Jul 14, 2016, 6:33 PM
When using Amazon.com do you sometimes forget to go to Smile.Amazon.com?
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Jul 14, 2016, 6:20 PM
Implications for FSHD and therapeutic developments
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Jul 6, 2016, 6:05 PM
NCATS Leading Crucial, Collaborate Efforts to Advance Rare Diseases Research.
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Jun 20, 2016, 5:51 PM
Seattle Mayor Ed Murray and US Senator Maria Cantwell pay tribute to the first ever World FSHD Awareness Day.
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Jun 17, 2016, 5:43 PM
Genea Biocells is donating to Friends for every picture of Myotube Mike tagged as #MyotubeMike4FSHD on Facebook, Twitter or Instagram.
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Jun 17, 2016, 5:36 PM
Sheila had the pleasure of meeting with Daniel G. Miller, Geneticist at Seattle Children’s Hospital, and Associate Professor at the University of Washington. Dr. Miller and colleagues from the University of Rochester, the University of Washington, and Seattle Children’s Hospital recently published a cross sectional study of two independent groups of people with FSHD, and identified serum biomarkers. The landmark study was published in the journal Neuromuscular Disorders.
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Jun 16, 2016, 5:28 PM
We are re-issuing our 2016 general call for research proposals. We are accepting any proposal that support a path toward a treatment or cure for FSH muscular dystrophy.
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May 24, 2016, 5:18 PM
Over $13K for research.
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May 23, 2016, 4:44 PM
Report of FSHD Summit held in Portland, Oregon, February 29 to March 1 of 2016.
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May 16, 2016, 4:28 PM
The first ever World FSHD Awareness Day.
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May 14, 2016, 4:11 PM
What should we use to track the benefits of a treatment in clinical trials for FSHD?
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Apr 29, 2016, 3:56 PM
The European Neuromuscular Centre (ENMC) has awarded a grant to discuss expanding the core set of data that is collected within those registries.
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Apr 20, 2016, 3:46 PM
Put a phone reminder and mark your calendars for the Seattle GiveBIG where every donation is stretched further by matching dollars.
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Apr 15, 2016, 2:53 PM
Patient, donor, and board member George Shaw asked key questions about what the Summit was all about.
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Apr 8, 2016, 2:39 PM
aTyr pharma has encouraging news regarding a possible treatment for FSHD using a novel protein-based biologic drug.
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Mar 24, 2016, 3:27 PM
Dr. Robert Bloch provides an update on his research into xenografting.
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Feb 23, 2016, 2:34 PM
FSHD clinical research project needs patients to complete study
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Feb 15, 2016, 2:22 PM
Grant for curriculum development and online resources for education by Robert Kao
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Feb 6, 2016, 2:15 PM
Upcoming meeting to move research in the direction of treatments.
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Feb 1, 2016, 1:59 PM
Treat yourself and your garden friends to a day of garden delights at the lovely Lynnwood Convention Center.
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Jan 17, 2016, 1:50 PM
A discussion of the current research projects and informal discussion with Friends of FSH Research
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Nov 4, 2015, 1:38 PM
Dr. Chamberlain will be investigating the how DUX4 expression in humans relates to disease pathology.
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Oct 21, 2015, 1:28 PM
Our 12th annual FiSHing for a Cure Auction and Gala will have the theme of "A Night in Havana". Don't forget your passports!
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Oct 3, 2015, 1:08 PM
Dr. Block will present a short talk entitled "Global Initiatives to Accelerate FSH Research" to introduce a panel discussion with the FSHD Champions
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Sep 2, 2015, 12:50 PM
Researchers at the University of Washington follow DUX4 - the real DUX4 - that's cool.
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Aug 12, 2015, 12:35 PM
Researchers in Australia have carried out some important experiments towards our understanding of the FSHD2-causing gene, SMCHD1.
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Jul 11, 2015, 12:02 PM
An industry/academic collaboration to test a lead compound in a potentially robust animal model of FSHD.
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Jul 11, 2015, 11:50 AM
An informal group discussion will be held in Toronto.
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Jul 11, 2015, 11:45 AM
Dr. Block will be leading a discussion about FSH Research at the University of Toronto.
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Jul 11, 2015, 11:36 AM
The next Western Washington FSH Community meeting is July 25.
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Jun 27, 2015, 5:05 PM
A new study suggests it may be possible to re-silence the DUX4-containing DNA array.
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May 26, 2015, 4:56 PM
Friends of FSH Research was given honorable mention at the University of Washington Dean's Circle this evening.
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May 14, 2015, 4:39 PM
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May 8, 2015, 4:12 PM
Friends of FSH Research and the Rock Bottom Brewery are teaming up for FSH research!
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May 4, 2015, 4:04 PM
Genea Biocells will develop a validated tool for the FSHD community - and we'll test important hypotheses along the way!
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May 3, 2015, 3:53 PM
Friends of FSH Research and FSHD Canada fund investigators at the University of Maryland.
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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.
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Apr 10, 2015, 3:21 PM
The board of Friends of FSH Research has approved a new strategic initiative to advance our research efforts.
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Mar 28, 2015, 3:08 PM
At the MDA scientific conference held in Washington D.C. in March, Dr. Daniel Miller presented his unpublished data on biomarkers in blood (serum) of people with FSHD
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Mar 17, 2015, 2:58 PM
FSHD was a hot topic at the MDA scientific conference in Washington D.C.
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Mar 13, 2015, 2:47 PM
In honor of 3/14/15, we have a donor match!
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Feb 21, 2015, 2:45 PM
We will be attending the MDA scientific conference. Meet us in DC!
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Feb 19, 2015, 2:35 PM
Our friends in Vancouver are throwing an amazing fundraiser to raise money for research.
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Feb 6, 2015, 2:19 PM
It's tough to put our finger on exactly why it's bad to have DUX4 around. A new paper sheds light.
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Feb 4, 2015, 2:06 PM
The Tapscott lab is entering the final year of a four-year grant. Let's see how they are doing.
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Feb 3, 2015, 9:07 AM
Progress update from Drs. Miller and Tawil.
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Jan 26, 2015, 1:59 PM
Friends of FSH Research raises a record $270,000 at annual auction and gala.
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Jan 20, 2015, 1:33 PM
Looking back on the research trends of 2014 helps us focus for the coming year.
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Jan 12, 2015, 1:25 PM
Dr. Parker has had her funding renewed based on approval of a progress report and submission of a new grant for the project's next steps that broadens the scope of impact of her work.
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Jan 11, 2015, 1:12 PM
Drs. Aihara and Kyba lay out a plan towards solving the crystal structure of DUX4.
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Jan 7, 2015, 12:57 PM
Dr. Wagner and a graduate student, Natoya Peart, have an innovative approach to reduce DUX4 levels.
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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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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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Dec 19, 2014, 12:04 PM
Just in case FSH muscular dystrophy (FSHD) wasn’t confusing enough, now there’s a lot of talk about FSHD2. Let’s take some time to make sure we’re all on the same page and understand what’s going on.
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Dec 10, 2014, 11:34 AM
The event of the year is fast approaching! Get your tickets today.
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Dec 10, 2014, 11:16 AM
The Friday afternoon before our annual auction we'll be hosting a research progress workshop for researchers, patients, and donors. All are welcome. Please RSVP.
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Nov 19, 2014, 11:04 AM
University of Waterloo senior Schuyler Schmidt researched FSHD for her class, and had never heard about the disease before.
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Nov 16, 2014, 10:53 AM
The Watershed Pub & Kitchen and Black Raven beer are teaming up to raise money for Friends of FSH Research.
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Oct 30, 2014, 10:41 AM
Spoiler alert: it's because of epigenetics.
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Oct 29, 2014, 10:28 AM
15% of Sales at The Tea Cozy will be donated to Friends of FSH Research.
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Oct 22, 2014, 10:14 AM
Join Friends of FSH Research at the Pacific Science Center where we will be learning about how muscles work!
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Oct 21, 2014, 9:46 AM
This past weekend, the International FSHD Research Consortium was held in San Diego alongside the American Society for Human Genetics Annual Conference.
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Oct 7, 2014, 9:37 AM
Join Friends of FSH Research and Mariel Colella at the 2014 Amica Insurance Seattle Marathon
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Sep 22, 2014, 9:27 AM
FSH Muscular Dystrophy has always suffered from an obscenely long and latin name. Learn about how we're demystifying the name, the disease, and the path to treatment.
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Sep 17, 2014, 9:17 AM
Friends of FSH Research has hired Dr. Gregory Block to bridge the gap between fundraising and science.
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Sep 16, 2014, 8:54 AM
Read about Friends of FSH Research new strategic direction.
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Sep 13, 2014, 8:45 AM
Silvère van der Maarel of Leiden University was awarded €1 million from the Princess Beatrix Fund for his pioneering work in FSHD research.
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Sep 2, 2014, 8:40 AM
An in-depth analysis of the latest publication on a mouse model for FSHD. What does it mean? Why do we need a mouse model?
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Aug 31, 2014, 2:57 PM
Drs. Filippova and Miller present their final results from the study.
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Jul 31, 2014, 10:12 PM
Jong Won Lim, postdoctoral fellow, provides an update on his fellowship.
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Jul 16, 2014, 9:42 PM
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Jun 3, 2014, 9:35 PM
Today the University of Washington announced that it received four years of funding for a Paul D. Wellstone Muscular Dystrophy Cooperative Research Center from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a branch of the National Institutes of Health (NIH).
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Jun 3, 2014, 9:22 PM
Amanda Rickard, a member of the Miller Lab at the University of Washington, submitted this article reviewing the ASGCT Conference held May 21-24, 2014.
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Apr 3, 2014, 9:09 PM
When you spend, Amazon gives.
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Mar 16, 2014, 9:01 PM
In order to further promote basic research, Friends of FSHD Research invites researchers to apply for travel grants of up to $2,000.
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Jan 31, 2014, 4:36 PM
Jong-Won Lim progress update.
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Jan 30, 2014, 7:44 PM
An amazing turnout and show of support.
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Jan 18, 2014, 7:36 PM
Dr. Kathryn Wagner provides a much needed tool.
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Jan 17, 2014, 6:17 PM
Science joins Nature Publishing Group to Improve Reproducibility.
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Jan 16, 2014, 6:06 PM
Human inactive X chromosome is compacted through a PRC2-independent SMCHD1-HBiX1 pathway.
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Jan 13, 2014, 10:09 AM
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Jan 8, 2014, 9:55 AM
The research goals of 2011-13 were to 1) create a model of FSHD that displayed features of the disease in muscles of laboratory mice through production of human DUX4 protein and 2) to test a therapeutic approach to block production of DUX4 protein in patient cell lines grown in tissue culture dishes in the laboratory.
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Jan 7, 2014, 9:45 AM
We have developed a high-throughput screen based on the toxicity of DUX4 when overexpressed in C2C12 myoblasts, and identified inhibitors of DUX4-induced toxicity from within a diverse set of 44,000 small, drug-like molecules.
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Nov 11, 2013, 8:54 AM
Dysregulation of 4q35- and muscle-specific genes in fetuses with a short D4Z4 array linked to FSHD.
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Nov 11, 2013, 8:31 AM
Kirkland Reporter article.
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Sep 21, 2013, 9:10 AM
Since founding the FSHD Canada Foundation a couple of years ago, one of the most pervasive concerns we have heard from FSHD-afflicted individuals is the need for a simple tool to prevent 'drop foot,' as this can often lead to falls and further damage to walking muscles.
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Sep 21, 2013, 9:00 AM
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Sep 11, 2013, 8:24 AM
Meeting to bring together the committee members to update one another on individual agency efforts and to discuss planning for revision of the Action Plan for the Muscular Dystrophies.
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Sep 1, 2013, 8:37 PM
The former FSH Scholar Gregory Block was recently awarded a 3-year MDA Development Grant for $179,994 to continue his research on Mechanisms of Wnt signaling in FSHD.
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Sep 1, 2013, 8:07 AM
Three funding collaborations between Friends of FSH Research & FSHD Canada.
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Aug 18, 2013, 7:16 PM
Friends of FSH Research and FSHD Canada Foundation are pleased to support Dr. Maura Parker’s project entitled "Generating FSHD-affected human muscle in mice for testing therapeutic strategies."
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Aug 9, 2013, 7:10 PM
Friends of FSH Research and FSHD Canada Foundation are pleased to support the Galina Filippova PhD & Daniel G. Miller MD PhD project entitled "Identification of small RNAs generated from the D4Z4 Array".
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Aug 9, 2013, 6:39 PM
Friends of FSH Research and FSHD Canada Foundation are pleased to support the Daniel G. Miller MD PhD & Galina Filippova PhD project entitled "Identification of Chromatin Modifier Genes Important for DUX4 Silencing."
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Jul 30, 2013, 6:30 PM
Unintentional bias and repeatability for preclinical studies has been gaining more and more attention as of late.
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Jul 7, 2013, 6:12 PM
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Jun 22, 2013, 5:32 PM
WNT/β-catenin signaling suppresses DUX4 expression and prevents apoptosis of FSHD muscle cells
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Jun 7, 2013, 5:25 PM
Magnetic resonance imaging shows short tau-inversion recovery (STIR) brightness in autosomal dominant FSHD1 suggestive of active inflammation/injury.
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Apr 19, 2013, 5:18 PM
Friends of FSH Research exists to encourage, promote and fund increased scientific and clinical research of FSHD to help advance the study and understanding of the disease, with the goals of identifying treatments and, ultimately, a cure. We invite you to submit a proposal for research that advances these goals.
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Apr 18, 2013, 5:05 PM
Nature Journals Aim to Improve Reproducibility.
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Apr 10, 2013, 4:50 PM
Friends of FSH Research announced a $7,500 FLEX Fund Grant awarded to Silvère van der Maarel, PhD in order to help fund the purchase of an in-situ muscle testing system.
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Apr 4, 2013, 4:47 PM
New mouse models which recapitulate several important aspects of FSHD are discussed.
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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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Mar 6, 2013, 4:21 PM
An ex vivo gene therapy approach to treat muscular dystrophy using inducible pluripotent stem cells.
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Feb 25, 2013, 4:09 PM
Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Amendments Act of 2013.
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Feb 20, 2013, 4:00 PM
By preventing DUX4 from being upregulated during muscle formation, we may be able to prevent further muscle wasting in patients with the disease.
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Feb 6, 2013, 3:34 PM
Using model organisms to identify new therapies and to understand the pathogenesis of FSHD.
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Feb 6, 2013, 3:26 PM
New findings about DUX4 have raised as many fundamental questions about the molecular pathology of this unique disease as they have answered.
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Feb 6, 2013, 2:49 PM
Notice of Upcoming Funding Opportunity: Rare Disease Clinical Research Consortia.
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Feb 6, 2013, 2:38 PM
Michael Kyba Receives MDA Grant to Study Muscle Developmental Deficits in FSHD.
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Feb 6, 2013, 9:56 AM
Final progress update from FSH Scholar Barbara Page.
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Nov 28, 2012, 2:07 PM
The primary cause of FSHD is abnormal activation of the Dux4 gene, so mouse models need to reproduce production of Dux4.
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Nov 11, 2012, 1:03 PM
Friends of FSH Research has helped fund another ground breaking project that has shed new light on the mechanism of muscle damage in Facioscapulohumeral Muscular Dystrophy, and suggests new targets for treatment.
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Oct 22, 2012, 12:55 PM
The milestones for year one were to perform an initial screen for Platform 1 and prepare and validate Platform 2.
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Sep 6, 2012, 12:41 PM
The chemicals Dr Kyba’s group has identified may help us to understand the chemical pathways that can indirectly inhibit the muscle toxicity associated with the DUX4 gene.
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Aug 3, 2012, 12:35 PM
Today, we are very excited to report that the research team is working to find compounds that will impact DUX4 and allow FSH muscle cells to survive.
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Jul 24, 2012, 12:23 PM
The Miller Lab has made exciting progress in the development of a platform for screening genes and compounds with activities that affect FSHD-specific pathogenic processes.
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Jul 17, 2012, 12:09 PM
It would appear that the initial MRI study by Seth Friedman, Ph.D. and the subsequent longitudinal study now in progress has spurred interest in using MRI as a diagnostic tool for FSHD.
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Jul 16, 2012, 12:03 PM
RICK Colella is happy to talk about the two world records he set last weekend at the U.S. Masters long course nationals, but the energy in his voice peaks when he starts discussing his role in eradicating a disease that affects a member of his family.
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Jun 1, 2012, 11:54 AM
Analysis of the hundreds of genes regulated by the DUX4 transcription factor reveals a new understanding of the pathology of FSHD and may lead to tools that accelerate the development of therapies.
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Apr 17, 2012, 11:12 AM
Asymmetric Bidirectional Transcription from the FSHD-Causing D4Z4 Array Modulates DUX4 Production
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Feb 12, 2012, 10:45 AM
Researchers at McMaster University have discovered a brief 10-minute massage helps reduce inflammation in muscle.
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Feb 1, 2012, 10:21 AM
Stem cell researcher has become the first Australian to win microscopic image competition.
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Jan 15, 2012, 10:04 AM
Recent discoveries provide us with a clearer understanding of how the genetics of FSHD translate into disease.
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Dec 28, 2011, 9:54 AM
DUX4 Activates Germline Genes, Retroelements, and Immune Mediators: Implications for Facioscapulohumeral Dystrophy.
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Nov 28, 2011, 9:36 AM
Degeneration of muscles in FHSD is associated with fatty replacement on magnetic resonance imaging.
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Nov 27, 2011, 9:27 AM
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Nov 20, 2011, 9:16 AM
The gene thought to cause FSHD, Double Homeobox Protein 4 (DUX4), is unusual because it is encoded within each unit (D4Z4) of large arrays present on chromosomes 4 and 10.
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Nov 11, 2011, 6:18 PM
The main findings describe pervasive inflammation and heterogeneity of affected calf muscles in FSHD.
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Oct 31, 2011, 5:50 PM
Test selected compounds for their efficacy in preventing damage caused by DUX4 expression.
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Oct 19, 2011, 5:41 PM
An update by Barbara D Page on the work done for the first of a 2-year project titled "Using model organisms to identify new therapies and understand the pathogenesis of FSHD."
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Sep 6, 2011, 5:16 PM
The Miller Lab has made exciting progress in the development of a platform for screening genes and compounds with activities that affect FSHD-specific pathogenic processes.
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Sep 6, 2011, 4:58 PM
A major goal of the Seattle FSHD research consortium has been to develop platforms for drug discovery.
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Aug 9, 2011, 4:22 PM
Summary of paper in Molecular Therapy from Joel R. Chamberlain and Davide Gabellini
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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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Oct 21, 2010, 3:58 PM
University of Rochester published interview with Dr. Rabi Tawil.
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Sep 20, 2010, 3:52 PM
An international research collaboration that includes research groups funded by the Friends of FSH Research has made a critical advance in determining the cause of FSHD.
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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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Sep 16, 2010, 3:08 PM
This brought together the various labs which have been collaborating in an effort to push ahead on FSH research through an open exchange of unpublished research.
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Jul 25, 2010, 3:01 PM
Clinical study participants needed.
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Jul 15, 2010, 2:52 PM
Researchers at the Stanford University School of Medicine have developed a technique they believe will help scientists overcome a major hurdle to the use of adult stem cells for treating muscular dystrophy and other muscle-wasting disorders that accompany aging or disease: They've found that growing muscle stem cells on a specially developed synthetic matrix that mimics the elasticity of real muscle allows them to maintain their self-renewing properties.
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Jun 26, 2010, 2:46 PM
Five-year NIH grant to a consortium of FSHD research labs.
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Apr 5, 2010, 2:44 PM
The Muscular Dystrophy Association (MDA), headquartered in Tucson, Ariz., and Friends of FSH Research (FFSHR), based in Kirkland, Wash., today jointly awarded a two-year, $200,000 grant to Joel Chamberlain, research assistant professor of medical genetics at the University of Washington. The grant, equally funded by the two organizations, will enable the laboratory led by Dr. Chamberlain to study RNA interference as an investigative and therapeutic tool for facioscapulohumeral muscular dystrophy.
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Mar 9, 2010, 2:16 PM
The current update of the report on Prevalence or reported number of published cases listed in alphabetical order of disease lists FSHD as occurring in approximately 7 out of 100,000 individuals. This is compared to 5 out of 100,000 individuals for Duchenne and Becker muscular dystrophy, formerly considered the most prevalent form of muscular dystrophy.
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Jan 23, 2010, 2:10 PM
Drs Tapscott and Miller aim to use this grant to finalize the preliminary studies and applications to NIH for funding an international cooperative study on FSHD.
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Sep 9, 2009, 2:05 PM
Dr. Kyba's paper on linking high expression of mDUX to myoblast death.
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Aug 1, 2009, 2:03 PM
FSHD research continues to move forward with the generous help from the Friends of FSH Research. Dr Dan Miller at the University of Washington’s Institute for Stem Cell and Regenerative Medicine, and Dr. Stephen Tapscott at the Fred Hutchinson Cancer Research Center think that one possible cause of muscle weakness in FSHD is a defect in the generation of muscle tissue that may start before birth, and persist as muscles are continually modified and repaired throughout life.
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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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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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Jun 1, 2009, 1:02 PM
Research on the cause and treatment of facioscapulohumeral muscular dystrophy (FSHD) might be entering a new, and hopefully better, era. For many years FSHD has been a difficult disease for medical researchers to study. In most genetic diseases, a gene with some known function is mutated and no longer performs its normal biological role. To find a treatment for such a disease, the medical researcher needs to identify therapeutic interventions that will compensate for the mutant gene.
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Aug 8, 2008, 12:37 PM
Dr. Tapscott aims to use this grant to identify the potential mechanisms that cause FSHD, identifying the molecular changes that result from the FSHD mutation.
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Aug 1, 2008, 12:34 PM
Dr. Kyba will insert D4Z4 repeats into the mouse genome in ES at a site on the X-chromosome, known to enable tissue-specific expression of transgenes, and to tolerate dominant lethal genes. He will study whether the presence of these repeats affects differentiation of the ES cells, and will produce mice bearing D4Z4 repeats, as a potential animal model for FSHD.
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Jul 19, 2008, 12:08 PM
Friends of FSH Research in collaboration with the MDA fund a two-year grant for Dr. Joel Chamberlain.
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Apr 15, 2008, 11:46 AM
$6.3 Million Dollar Grant for FSH Research — The Pathogenesis of FSHD.
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Jan 16, 2008, 11:27 AM
Miller & Tapscott provide a first year summary of progress.
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Aug 18, 2007, 11:42 AM
Seattle Time article on Friends of FSH Research