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FSHD Research Funding Overview 2016

Reporting on worldwide funding of FSHD research.
For the past several years the FSHD Champions group, which comprises most of the FSHD organizations worldwide, including Friends of FSH Research, has compiled the funding by each … http://fshfriends.com/blog/fshd-research-funding-overview-2016/

Chronic Pain in FSHD

Chronic Pain Has a Strong Impact on Quality of Life in FSHD.
A research paper on the characteristics and impact of pain on quality of life (QoL) in patients with facioscapulohumeral dystrophy (FSHD) was recently published in Muscle & Nerve … http://fshfriends.com/blog/chronic-pain-fshd/

Progress Report: Xenograft Mouse Model

Dr. Bloch provides a brief update of his progress on a xenograft mouse model.
by Robert J Bloch PhD See grant: A Xenograft Model of FSHD for Testing Therapeutics We have been making good progress in our development of methods to generate pure, functiona… http://fshfriends.com/blog/progress-report-xenograft-mouse-model/

Keep Calm - It's Raffle Time!

Pre-Auction Table Captain/Sponsor Raffle
As a reward for organizing or paying a full table of ten (10), your name will be entered into a drawing for a certificate good for one (1) night’s stay at the brand new Lake Washi… http://fshfriends.com/blog/keep-calm-its-raffle-time/

Scott Harper at Science Week

Scott Q. Harper, PhD presents emerging molecular therapies for FSHD at FSHD Global event.
This video was produced by FSHD Global Research Foundation. Dr. Scott Q. Harper recently presented a talk titled Emerging Molecular Therapies for FSHD at the annual Science Wee… http://fshfriends.com/blog/scott-harper-science-week/

Emerging Molecular Therapies for FSHD

Scott Q Harper, PhD reviews work at his lab at Nationwide Children's Hospital.
This webinar was produced by FSH Society. Scott Harper reviews current work at his lab directed at molecular therapies for FSHD. Both Friends of FSH Research and FSH Society su… http://fshfriends.com/blog/emerging-molecular-therapies-fshd/

Layman's Description of FSHD

Leo H Wang, MD PhD provides a layman's description of the clinical features and molecular biology of FSHD.
Leo H Wang, MD PhD and Associate Professor in the Department of Neurology at the University of Washington provides a description of both the molecular biology of FSHD and clinical… http://fshfriends.com/blog/laymans-description-fshd/

Kendra Gives Back Party

Enjoy sips, sweets and making your own custom jewelry at the Color Bar. 20% of sales benefit FSHD research.
A perfect day for holiday shopping! Enjoy sips, sweets and making your own custom jewelry at the Color Bar! December 7 | 6pm — 9pm Kendra Scott — Bellevue Square 179 Belle… http://fshfriends.com/blog/kendra-gives-back-party/

Tips for Air Travel with a Power Wheelchair

Howard Chabner addresses issues of air travel with a power wheelchair.
Reprinted with permission from original article (Sep-2017) by Howard Chabner. Howard writes articles on travel and accessibility. I have facioscapulohumeral muscular dystrophy … http://fshfriends.com/blog/tips-air-travel-power-wheelchair/

BETi Compounds Alter DUX4 Expression

Amy Campbell and Fran Sverdrup have recently published a paper on initial results of a screen for compounds that inhibit DUX4 expression.
The recent paper from Amy Campbell and Fran Sverdrup (see also our Ask the Expert article wherein Fran discusses his work on BET inhibitors) provides details on BETi compounds tha… http://fshfriends.com/blog/beti-compounds-alter-dux4-expression/

September 2017 RFP

Our latest RFP is now open.
Friends of FSH Research has opened our September Request for Proposals process. Friends of FSH Research is a Seattle-based non-profit that has been investing in FSHD research f… http://fshfriends.com/blog/september-2017-rfp/

George & Lynn

George & Lynn's commitment to Friends of FSH Research is a natural fit due to their common goal of basic research.
Some people are visionaries and some people are doers. George and Lynn have a nice mix of both! In the late1990’s they began funding FSH research through their family foundation. … http://fshfriends.com/blog/george-lynn/

World FSHD Day Proclamation

Washington State Governor Jay Inslee proclaims June 20th "FSHD Awareness Day."
June 20, 2017 marks the 2nd annual World FSHD Day, and we’re pleased to share this Proclamation from the State of Washington acknowledging it as “FSHD Awareness Day”. The word is … http://fshfriends.com/blog/world-fshd-day-proclamation/

Friends of FSH Research recognizes local researchers

Since 2004 efforts have been made locally to infuse the Seattle research community with funds for FSHD research.
Press Release Friends of FSH Research recognizes researchers at Fred Hutch, UW Medicine, and Seattle Children’s Hospital Since 2004, new efforts have been made locally to infus… http://fshfriends.com/blog/friends-fsh-research-recognizes-local-researchers/

Progress Report: Histochemical and morphometric analysis of FSHD biceps

Update from Dr. Wagner regarding her study ofthe histopathological features of FSHD affected muscle.
Update by Dr. Kathryn Wagner. This is a proposal to study the histopathological features of muscle in a large biobank from FSHD patients and their first degree family members. … http://fshfriends.com/blog/progress-report-histochemical-and-morphometric-analysis-fshd-biceps/

Progress Report: Clinical Study using MRI to measure immune response

Dr. Wang provides a progress report on his clinical study.
I think that this progress report exemplifies the trials and tribulations that all researchers go through in putting together a human clinical study. A lot of regulatory bodies, e… http://fshfriends.com/blog/progress-report-clinical-study-using-mri-measure-immune-response/

Progress Report: Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment

Progress report from Dr. Tawil on making the National Registry more useful for research by providing genetic testing.
Aims: The aim of the present proposal is to offer present and future National FSHD Registry participants, who have not been genetically confirmed, the chance to get detailed genet… http://fshfriends.com/blog/progress-report-optimizing-utility-national-registry-fshd-research-and-trial-recruitment/

Highlights of 2017 MDA Conference

Genea Biocells scientists presented work from four disease modeling projects.
Reprinted with permission. Genea Biocells scientists presented work from four disease modeling projects at the 2017 Muscular Dystrophy Association (MDA) Scientific Conference i… http://fshfriends.com/blog/highlights-2017-mda-conference/

You Gave BIG

Thanks to you, we exceeded our Give BIG goal.
You did it! Our goal was exceeded for a total of $24,892 raised for FSH research! Our deepest gratitude to our GiveBIG Ambassadors for providing the matching funds and to everyone… http://fshfriends.com/blog/you-gave-big/

GiveBIG is today!

GiveBIG campaign sponsored by the Seattle Foundation.
GiveBIG by midnight tonight! Thanks to our GiveBIG Ambassadors, we're thrilled to announce that this year your GiveBIG donations up to $12,000 will be MATCHED! Yes, the FIRST $… http://fshfriends.com/blog/givebig-today/

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