Living Spiritually with FSHD: Finding Strength, Meaning, and Community

In October, the FSHD Society launched Living Spiritually with FSHD, a new Lieu de rassemblement that welcomes anyone exploring how faith, spirituality, and a sense of meaning intersect with life with FSHD. Whether your diagnosis has reshaped your beliefs—or your beliefs help you navigate the day-to-day—this group offers a warm space for open conversation, reflection, and support. All perspectives are welcome: religious, spiritual, questioning, or simply curious. 

At our inaugural session, co-moderators Michael King and Joanne Wakim welcomed 14 participants (including international voices) and shared moving reflections on how FSHD has shaped their spiritual journeys. Joanne, a CPA living with FSHD, spoke about the faith, hope, and love that anchor her purpose and joy, and her commitment to communities that lift one another up. Michael, recently diagnosed after years of misdiagnosis and now the FSHD Society’s North Carolina Chapter Director, described leaning on his Christian faith to meet daily challenges while seeking ways to transform hardship into service. 

The conversation blossomed as attendees offered their own stories and hopes for the group—connection, courage, and practical ways to live with purpose. In our second meeting, we explored “Finding Meaning in Redemptive Suffering,” which opened into a lively, compassionate dialogue about resilience, gratitude, and what sustains us. 

Coming up: In December, Rabbi Eric Feld (Ahavath Achim Synagogue, Atlanta) will join as a guest speaker to share insights from the Jewish faith that invite reflection across all faiths and spiritual paths. Register here >>

If you’re looking for a community that honors both your lived experience and your search for meaning, we’d love for you to join us.