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Spring RFP

Spring 2018 Request for Research Proposals.
Friends of FSH Research is a Seattle-based non-profit that has been investing in FSHD research for over 13 years (www.fshfriends.org/research). Our mission is to ultimately find a… http://fshfriends.org/blog/spring-rfp/

Research Presentation Slides

Slide decks for Dr. Tapscott & Dr. Wang from the 27-Jan presentations.
At the request of many participants of the Wellstone FSHD Patient Day update, which was held from 1-4pm on the day of the Annual Auction, we have obtained copies of some of the pr… http://fshfriends.org/blog/research-presentation-slides/

Pre-clinical Safety and Off-Target Studies to Support Translation of AAV-Mediated RNAi Therapy for FSHD

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.
Harper's lab had previously designed two miRNAs, labeled mi1155 and mi405, and.had performed a low dosage test on mouse muscle. This paper describes what happened when the dosage … http://fshfriends.org/blog/pre-clinical-safety-and-target-studies-support-translation-aav-mediated-rnai-therapy-fshd/

A Royal Affair

Annual Auction for FSHD. NEW RENTON LOCATION.
You are cordially invited to Together investing in a cure for FSH muscular dystrophy RENTON Hyatt Regency Lake Washington Grand Ballroom1053 Lake Wash… http://fshfriends.org/blog/royal-affair/

Progress Report: 3rd Gen Oligonucleotide Targeting DUX4 in Mouse Model

Yi-Wen Chen DMV PhD provides an update on investigating 3rd generation oligonucleotides.
by Yi-Wen Chen See grant: Investigation of a third generation oligonucleotide targeting DUX4 using a new mouse model of FSHD Updated 14-Feb-2018 (added more comprehensive informat… http://fshfriends.org/blog/progress-report-3rd-gen-oligonucleotide-targeting-dux4-mouse-model/

Progress Report: Utilization of cell-free DNA as a biomarker

Initial progress report provided by Premi Haynes PhD.
by Premi Haynes See grant: Utilization of cell-free DNA (cfDNA) as a sensitive biomarker for clinical trial end point for individuals with FSHD Cell free DNA (cfDNA) are pieces… http://fshfriends.org/blog/progress-report-utilization-cell-free-dna-biomarker/

MRI change metrics of facioscapulohumeral muscular dystrophy: STIR and T1

Follow-on publication for previously funded grant.
See MRI change metrics of facioscapulohumeral muscular dystrophy: STIR and T1 INTRODUCTION: MRI evaluation in facioscapulohumeral muscular dystrophy (FSHD) demonstrates fatty … http://fshfriends.org/blog/mri-change-metrics-facioscapulohumeral-muscular-dystrophy-stir-and-t1/

Progress Report: Defining the role of post-translational modification on FSHD protein DUX4

Jocelyn Eidahl, Post-Doctoral Scientist at Nationwide Children’s Hospital provides a progress update.
Update by Jocelyn O Eidahl PhD. Aim 1: To define a subset of DUX4 post-translational modifications (PTMs) from affected models. We have finalized our list of DUX4 PTMs found… http://fshfriends.org/blog/progress-report-defining-role-post-translational-modification-fshd-protein-dux4/

Progress Report: Histochemical and morphometric analysis of FSHD biceps

Final progress report from Dr. Wagner.
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.org/blog/progress-report-histochemical-and-morphometric-analysis-fshd-biceps1/

Wellstone Research Update

A discussion on recent research advances at the Hyatt prior to the Annual Auction.
Please join the Seattle Wellstone Center along with Friends of FSH Research in a Research Update at 1pm to 4pm on January 27, 2018 prior to the auction. We will discuss recent… http://fshfriends.org/blog/wellstone-research-update/

Giving Tuesday 2017

Have your Giving Tuesday donations matched through facebook and The Gates Foundation.
As you have likely heard, on Giving Tuesday facebook & The Gates Foundation are each providing $1 million in matching funds. It seems like an opportunity not to pass up. My ult… http://fshfriends.org/blog/giving-tuesday-2017/

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.org/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.org/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.org/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.org/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.org/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.org/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.org/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.org/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.org/blog/tips-air-travel-power-wheelchair/

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