8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT How can you enjoy a real vacation when you're caught up with concerns about caring for your loved one. It takes a huge amount of planning and anticipating contingencies to travel at all. How do you regain that sense of freedom... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how open to be about their diagnosis and how much they are willing to discuss it amongst themselves. Have you wanted to discuss genetic testing or... Read More »
Tuesday, July 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our discussions about transitioning to assistive devices, looking closer at how insurance impacts this need and looking at building community within our group. This is our mutual support and social group... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »
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