Young Adults

Young Adults Monthly Meeting

8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT

Have you heard about BetterLife FSHD? It’s the FSHD Society’s pathbreaking web portal for helping you navigate your health journey. As you answer the short surveys, the system will enable you to track what you are doing (for example with exercise, diet, pain management, mental health, etc) and generate valuable data you can share with your medical providers. You can see how you are doing with respect to the rest of the community. BetterLife will send you advice and resources tailored to you. And your anonymized data will power research to improve medical care and advance research and clinical trials. Kayleigh Worek will explain how it all works, walk you through how you can join, and answer your questions.

FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a new position, or already on a career track, the FSHD Young Professionals group will help you develop a valuable network of friends facing similar challenges.

Our group is hosted and facilitated by volunteers who are excited to connect with you. We meet once a month via Zoom. Mark your calendar for the third Monday at 8pm ET/5pm PT. Once you join the group, no need to register again; you will be sent regular reminders and the Zoom link.

You can also join the conversation on Discord.

To contact us directly, please email: youngprofessionals@fshdsociety.org.