New England Chapter

Connect. Support. Inform. Strengthen.

Welcome to the New England Chapter

The New England 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.

We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.

Join your local chapter and learn how we can support you on your FSHD journey.

Meet the Team

  • Kathy Senecal

    Kathy Senecal

    In 2017, Kathy Senecal started the Connecticut Connections meetings, which later became the Connecticut Chapter and is now part of the New England Chapter. The group originally met in person once a month but switched to Zoom to reach more people.

    By sharing support, ideas, and personal experiences, the group has built a strong sense of community. This connection helps everyone feel united as they navigate the challenges of FSHD together, while also supporting the FSHD Society’s efforts to advance treatments and improve the lives of those affected by the condition.

    Contact Kathy directly or visit the New England Facebook page.

Volunteer with the Chapter

While Kathy 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.

Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.

Upcoming New England Chapter Events

Today