Remembering Dan Perez, co-founder of the FSHD Society and a driving force in FSHD research and advocacy.

Living Spiritually with FSHD is a Gathering Place group that offers a welcoming space for individuals exploring the connection between faith and life with FSHD. Whether your spiritual journey has been shaped by your diagnosis or your beliefs have influenced how you navigate FSHD, this group invites open conversation, reflection, and support. All beliefs are welcome, including those rooted in religion, spirituality, or simply a sense of something greater than yourself.
Please note, these sessions will not be recorded to give participants the opportunity to speak openly about their personal experiences. Guest presentations may be recorded at the group moderator’s discretion.
Social Media GraphicsJoanne is a CPA and has been living with the symptoms of FSHD. Her belief in something bigger than herself has given her the faith, hope and love to lead a positive, purposeful, joyful life no matter her circumstances. She participates in many different kinds of communities – all geared to lifting each other up and giving help and hope to those in need.
Michael King was recently diagnosed with FSHD after a long journey of misdiagnosis. He is the North Carolina Chapter Director for the FSHD Society and actively involved with the FSHD community. As a follower of Jesus, he leans on his faith to weather the daily challenges of the disease while trying to find ways to glorify God through his journey. Michael enjoys pursuing his passion for photography, especially when wildlife is his subject, and recently started a new hobby of making homemade ice cream.