Todo sobre la aparición temprana

NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025.

7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT

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.

¿Qué es la FSHD de inicio temprano?

Early-onset FSHD (also called infantile FSHD) is a less prevalent form of FSHD characterized by facial weakness appearing before the age of 5 and/or scapulohumeral (shoulder and arm) weakness before age 10. About 5-10 percent of FSHD is early-onset. Symptoms may progress more quickly, so people with early-onset FSHD may experience significant disability and wheelchair use in their teens and 20s. For more information, visit ¿Qué es la FSHD de inicio temprano?

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.