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Lighting the Way to a Cure
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT
This month we will be discussing how to talk about an FSHD diagnosis with family members who may be at risk, particularly children. When do we tell them, if ever? How do we tell them? What can go wrong? We will be joined by Julie Cohen, a certified genetic counselor at the Kennedy Krieger Institute in Baltimore, MD, who has extensive experience counseling families in this situation.
NEW!! We will open the Zoom room a half hour early (4:30 pm ET) so members can enjoy an open forum to discuss whatever is on their minds. Rick Whitehead will be on hand to welcome you in. Wellness Hour has become such a popular destination and we never have enough time for everyone to share what’s on their minds, so we thought we’d try this approach.
Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in other directions, that’s OK! We hope you’ll drop by to enjoy the company of some of the wonderful people in our community.
The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through.
If you are interested, please register by clicking on the link below. You only need to register once for the monthly series. You’ll receive notifications from Zoom with the meeting information.