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.
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.
Feb 1, 2018, 9:51 PM
Slide decks for Dr. Tapscott & Dr. Wang from the 27-Jan presentations.
Nov 28, 2017, 8:32 PM
A discussion on recent research advances at the Hyatt prior to the Annual Auction.
Nov 20, 2017, 8:14 PM
Chronic Pain Has a Strong Impact on Quality of Life in FSHD.
Oct 26, 2017, 7:55 PM
Scott Q Harper, PhD reviews work at his lab at Nationwide Children's Hospital.
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.
Sep 26, 2017, 7:32 PM
Howard Chabner addresses issues of air travel with a power wheelchair.
May 1, 2017, 3:40 PM
Interview of Dr. Joel Chamberlain regarding her lab's work on therapy development.
Feb 28, 2017, 2:06 PM
Howard Chabner updates 2013 memo on recommendations for various types of medical and mobility equipment.
Feb 8, 2017, 1:45 PM
A tool under development at the UW to provide routing information for someone with limited mobility.
Dec 22, 2016, 12:28 PM
Updates and round-table discussion on FSHD on the morning of the January Auction.
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.
Jul 6, 2016, 6:05 PM
NCATS Leading Crucial, Collaborate Efforts to Advance Rare Diseases Research.
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.
Feb 15, 2016, 2:22 PM
Grant for curriculum development and online resources for education by Robert Kao
Feb 6, 2016, 2:15 PM
Upcoming meeting to move research in the direction of treatments.
Jan 17, 2016, 1:50 PM
A discussion of the current research projects and informal discussion with Friends of FSH Research
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
Jul 11, 2015, 11:50 AM
An informal group discussion will be held in Toronto.
Jul 11, 2015, 11:45 AM
Dr. Block will be leading a discussion about FSH Research at the University of Toronto.
Dec 23, 2014, 12:23 PM
Carlos Romero paid a visit to the folks at Good Morning America on Tuesday Morning.
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.
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.
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!