Welcome to the St. Louis Chapter

The St. Louis chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.

Ofrecemos apoyo, compartimos recursos locales y le mantenemos informado sobre las últimas investigaciones y cuidados. Tanto si le acaban de diagnosticar como si lleva años viviendo con FSHD, estamos aquí para apoyarle en cada paso del camino.

Únete a tu sección local y descubra cómo podemos ayudarle en su proceso con la FSHD.

Conoce al equipo

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  Marsha Sverdrup

  Marsha and her family were introduced to the world of FSH when her oldest child, who was 10 at the time, was diagnosed with the infantile form of the disease. With no family history of FSH, the diagnosis came as a complete shock. As a parent, Marsha wanted to do everything possible to help her child and joined the FSHD Society to find support and learn more about the condition.

  Through the FSHD Society, Marsha found a caring community of people who offered both information and emotional support. Now, as the Director of the St. Louis Chapter, Marsha is grateful for the chance to give back to this community that has been so helpful and supportive throughout her journey.

  Contact Marsha directly o visite el St. Louis Facebook page.