Everything Early Onset – Life Hacks

First Friday of every month

8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT

Do you have any unique strategies to cope with the challenges presented by your FSHD? Perhaps you use your wheelchair as a fork lift, or have a grabber in every room of your house, or find yourself using the most peculiar of surfaces as elbow reinforcements… Ever wanted to share this wisdom or learn new tricks from others?? Well then JOIN US Friday, October 4^th at 8pm EST in the Everything Early Onset online group as we share our favorite FSHD Life Hacks. Most creative hack wins bragging rights for at least a month.

The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It will be a space to connect, find understanding, build friendships, and share valuable insights. We hope to offer a mixture of social, educational, and otherwise enriching topics. Register below to receive the link to the Zoom.

Meet our moderators

Marisa lives with early onset FSHD and has been a power wheelchair user since age 22. She is a strong advocate for disability justice, obtained her ADA Coordinator certification in 2023, and currently works for her state’s Protection & Advocacy agency helping her disabled community access employment. She enjoys sharing her knowledge and her story on her YouTube and Instagram “Disabled in Nature”. Marisa lives in South East Michigan with her husband, dog, and vegetable garden.

Arquero Es un joven de 23 años con FSHD de aparición temprana. Le gusta jugar a Dragones y mazmorras, hacer manualidades y forma parte de un equipo local de fútbol en silla eléctrica. Archer utiliza una silla eléctrica a tiempo completo y participa activamente en la Sociedad FSHD y en la comunidad de personas con discapacidad en general.