Living Spiritually with FSHD

Join us for the very first meeting of our newest Gathering Place group, Living Spiritually with FSHD! This group is designed to provide a welcoming space where we can connect, share, and explore the ways faith and FSHD intersect in our lives. During this first session, we’ll introduce ourselves, discuss the goals and purpose of the group, and invite participants to reflect on two guiding questions: How has FSHD impacted your faith? and How has your faith shaped your journey with FSHD?

This will be an open, supportive conversation where everyone’s experiences are valued. The session will not be recorded to ensure privacy and encourage honest sharing. We look forward to starting this journey together and building a community of understanding and connection.

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.

Meet your moderators:

Joanne Wakim

Joanne 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

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.