St. Louis Chapter

الاتصال. الدعم. إعلام. عزز.

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.

نقدم الدعم ونشارك الموارد المحلية ونطلعك على أحدث الأبحاث والرعاية. سواء تم تشخيص حالتك حديثاً أو كنت مصاباً بهذا المرض لسنوات، فنحن هنا لدعمك في كل خطوة تخطوها في طريقك.

انضم إلى فرعك المحلي وتعرّف كيف يمكننا دعمك في رحلتك مع مرض نقص المناعة المكتسب.

تعرّف على الفريق

  • Marsha Sverdrup

    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 أو قم بزيارة St. Louis Facebook page.

تطوع مع الفرع

While Marsha is powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.

تواصل مع بيث جونستون، رئيس قسم القيادة التطوعية لتتعلم كيف يمكنك إحداث تأثير والمشاركة.

Upcoming St. Louis Chapter Events

  • St. Louis Chapter Meeting

    2026 اجتماعات الفصل 2026
    Modern Brewery 5200 Oakland Ave, St. Louis, MO 63110 5200 Oakland Ave, St. Louis, MO, United States

    June 20, 2026 at 7:30pm Modern Brewery (5200 Oakland Ave, St. Louis, MO 63110) + STL Science Center Planetarium (5100 Clayton Ave, St. Louis, MO 63110) DETAILS: We will first meet […]