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. 

Download the 2018 FSHD Connect Program. The talks can be viewed by watching the playlist below or by scrolling down and clicking on titles of individual talks.

Understanding FSHD

• FSHD 101: DUX4—Prince Charming Turned Into Joker, Alexandra Belayew, PhD. (Slides)
• Beyond Evidence-Based FSHD Care Guidelines: What We Know From Clinical Experience, Rabi Tawil, MD. (Slides)
• Q&A with Drs. Belayew and Tawil

The Road to Treatments

• 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

Day 2 Selected Presentations

• 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)