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8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's discussion will focus on promoting a positive outlook. Staying positive can be challenging while one is dealing with uncertainty and experiencing emotional needs of lifestyle changes. How do we cope with the pain […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month we have the pleasure of welcoming Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). We're eager to meet the next generation of PTs who […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun Many of us procrastinate when it comes to planning for the future, especially when the future could include illness, disability, having to find caregivers, financial uncertainty, or the prospect of having to turn over control of your […]
In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of slow progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug does make it to market, patients may not be able to afford it because insurers and government payers often delay or deny access because they […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler Young. About himself Chandler says "I’m 23 and live in North Carolina, was formally diagnosed with FSHD at 16 but showed symptoms very early in […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise Hoffmann Our guest is Heloise Hoffmann, who will share insights about coping with the diagnosis of FSHD based on her personal journey from age 13, […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This is part two of this month's series with Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). Arielle will be discussing nerve mobility and pain. Postural impairments […]
When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and guest Priscilla Sharun discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For Priscilla, regular […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
