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* below:

• 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)

*If a talk is not highlighted, the slides are not yet available.