The 2020 FSHD Connect Classroom was held on Saturday, June 27, 2020, as a one-day online conference, to take the place of our biennial FSHD Connect conference. The conference was a great success, with more than 400 registrants who enjoyed a series of stellar presentations by medical and research superstars, with the latest news on medical care, drug development, and our nationwide initiatives. We will be posting videos and slides from the conference shortly. (To browse previous FSHD Connect conferences, scroll down.)
Slides and additional resources on orthotics from Allard can be downloaded here. Use pass: Webinar2020
Session 1 - FSHD 101, what every family needs to know
- What causes FSHD? - Matthew Harms, MD, Columbia University Medical Center
- Managing the condition - Nicholas Johnson, MD, Virginia Commonwealth University (slides)
- ACT clinical trial for FSHD - Christopher Graham, PhD, Queen's University Belfast
- Session 1 Q&A
Session 2 - Living well
- Orthotics and durable medical equipment, Beth Deloria, Allard (slides)
- Accessible Living, Karen Pitsley, Transforming Architecture (slides | accessible home checklist | resources)
- Our community rocks! - Community Engagement Team
Session 3 - Clinical trials and clinical trial readiness
- Acceleron ACE-083 trial and lessons learned, Kenneth Attie, MD, Acceleron Pharma Inc. (slides)
- The ReSolve study, Jeffrey Statland, MD, University of Kansas Medical Center (slides)
- Voice of the Patient Forum, Jamshid Arjomand, PhD, FSHD Society
Session 4 - Drug Development
- siRNA therapy, Anthony Saleh, PhD, MiRecule
- Gene therapy, Scott Harper, PhD, The Ohio State University/Nationwide Children's Hospital
- Evaluating Regulation of Gene Expression to Treat the Root Cause of FSHD, Michelle Mellion, Fulcrum Therapeutics
- Q&A
- Getting involved with research, with Kiley Higgs, Jack Gerblick, Jim Albert
Legacy Award & Closing remarks
2018 FSHD Connect Videos!
Our 2018 FSHD Connect conference was held at the Flamingo Las Vegas on June 9-10, 2018. The conference gathered together 400 patients, family members, researchers, physicians, and health experts for a day-and-a-half of intensive learning and community activism. Our meeting featured talks by thought leaders on the latest in scientific research and medical management of FSHD, including 10 academic and industry researchers who are actively working on new treatments for FSHD. The FSH Society also launched its national chapter program at this meeting.
Please share this post with family members and urge them to join the FSH Society if they have not done so already. There has never been a more important time for all individuals with FSHD and their families to be actively engaged with these efforts.
View the 2018 FSHD Connect Program. The talks can be viewed by watching the playlist below or by accessing the accordions to the right of the video and clicking on titles of individual talks.
- Clinical Trial Readiness, Jeffrey Statland, MD, and Research Volunteer Panel. (Slides)
- FSHD Therapies 101, Scott Harper, PhD
- The Pipeline for FSHD Therapies, Panel
- Targeting Muscle Growth and Regeneration
Peter Zammit, PhD (overview of muscle biology)
Ken Attie MD, Acceleron (myostatin inhibitor; Slides)
Ryan Wuebbles, PhD, Strykagen (small molecule; Slides)
Chad Heatwole, MD (HGH + testosterone: Slides) - Targeting DUX4 Expression and DUX4 mRNA
Lucienne Ronco, PhD, Fulcrum Therapeutics (small molecule)
Monica Hayhurst Bennett, PhD, Genea Biocells (small molecule; Slides)
Fran Sverdrup, PhD & Ultragenyx (small molecule; Slides)
Charis Himeda (CRISPR-based repression of DUX4; Slides)
Yi-Wen Chen, DVM, PhD (antisense)
Scott Harper, PhD (gene therapy)
Q&A
- Targeting Muscle Growth and Regeneration
- Sharing Our Stories, Finding Our Voice, Tim Hollenback, Host, FSH Society Radio
- Moving Well: Physical Therapy and Bodywork, Katy Eichinger, PT, PhD, NCS, of the University of Rochester Fields Center for FSHD Research (Slides), and Ruth Hereford of the Muscular Dystrophy Support Centre, UK, and Beatriz Nascimento.
- Eating Safely and Talking About It, Kiera Berggren, MA/CCC-SLP, MS, University of Utah (Slides)
- Living Well With FSHD: How the Science of Personal Well-Being Can Improve Your Life, Ora Prilleltensky, EdD (Slides)
- Loving Well: A Session for Friends and Family Members of People Affected With FSHD, Isaac Prilleltensky, PhD (Slides)
- Let’s Activate! Launching the FSH Society’s national chapter program.
- Respiratory Health: What Everyone With FSHD Should Know, Lou Saporito, RRT, New Jersey Center for Noninvasive Mechanical Ventilation and Pulmonary Rehabilitation (Slides)
2016 FSHD Patient Connect Conference
The FSH Society’s 2016 Patient Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM) at the Westin Copley Place Hotel in Boston, Massachusetts. The conference brought together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. Download the Patient Connect program here.
Presentations and breakout sessions slides can be downloaded by clicking on the highlighted titles* to the right.
*If a talk is not highlighted, the slides are not yet available.
- FSHD Science 101. Alexandra Belayew, PhD (VIDEO)
- Genetics and genetic testing. Silvere van der Maarel, PhD (VIDEO)
- How FSHD affects your body and health. Kathryn Wagner, MD (VIDEO)
- Getting to know you. Claudio Ordonez, MD (VIDEO)
- Treatment strategies (panel): Peter Jones, PhD; Yi-Wen Chen, PhD; Scott Harper, PhD (VIDEO)
- Getting ready for clinical trials. Jeff Statland, MD (VIDEO)
- Clinical trials: current and impending. Rabi Tawil, MD (VIDEO)
- FSHD tissue donation registry. Denee Tidwell (VIDEO)
- Physical Therapy & Exercise (Katy Eichinger, PhD)
- Respiratory health (Nicholas Hill, MD)
- Living well: Life with FSHD (Ora Prilleltensky, EdD)
- Loving well: Living with a person with FSHD (Isaac Prilleltensky, PhD)
- Pregnancy & women’s health (Kelly Minks, MS, CGC)
- Waking up your muscles (Lynnette Rasmussen)
- Managing pain & chronic fatigue (Katy Eichinger, PhD)
- For the newly diagnosed & mildly affected (Carol Birnbaum, MD)
- Living well and loving well: Meeting everyone’s needs (Ora Prilleltensky, EdD & Isaac Prilleltensky, PhD)
2014 FSHD Connect Conference
Event Date: Saturday-Sunday, August 16-17, 2014
Event Place: The Westin Boston Waterfront
425 Summer Street
Boston MA 02210
The 2014 FSHD Connect Meeting, sponsored by the FSH Society, brought together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. This year’s meeting featured talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops. Popular breakout sessions include topics that members requested, including teenagers and young adults, caregiving, traveling and sports. View the 2014 FSHD Connect Final Program here.
Here are the slide decks from the 2014 FSHD Connect conference:
- Peter Jones: Genetically similar, epigenetically different
- Ray Huml: Natural history studies
- Sabrina Sacconi: FSHD & Nutrition
- Shree Pandya: Update on physical therapy and exercise recommendations
- Stephen Tapscott: Consensus model for FSHD identifies opportunities for therapy
- Yi-Wen Chen: Multicenter infantile onset FSHD study
2012 FSHD Society Patient Conference
Access the video playlist for the 2012 FSHD Society patient conference HERE or you can begin watching the video on the right!