We’re excited to share with you the preliminary agenda for our 2018 FSHD Connect conference, where a coalition of patient and families, top researchers and clinicians, and advocates will gather to learn about the state of the field, advances in treatment research, and living well with FSHD.
Back by popular demand to give her “FSHD 101” talk is Alexandra Belayew, PhD, who explains the DUX4 hypothesis with the help of rubber bath toys and culinary metaphors. One of the world’s leading FSHD physicians, Rabi Tawil, MD, will present on the health impacts of FSHD and evidence-based guidelines for managing your care. Jeffrey Statland, MD, will discuss how the FSHD Clinical Trial Research Network is readying the field for drug trials in the near future. Scott Harper, PhD, and Peter Jones, PhD, will lead off a session spotlighting some of the promising strategies that are now being pursued to treat FSHD.
On Day 2, we present ten breakout sessions on topics voted as being of greatest interest by our members. These include physical and psychological interventions to improve quality of life, what every person with FSHD should know about respiratory health, the future of assistive technologies, the ins and outs of volunteering for research studies and clinical trials, and opportunities for all who live with FSHD–patients, caregivers, family members–to share stories, knowledge, and support.
You will also learn about the FSH Society’s strategic focus–to empower our families to become effective voices and forces for progress, and to accelerate the development of treatments and a cure–and how everyone can become part of this unstoppable movement.
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