First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will talk about the challenges of making and keeping friends, in light of our many mobility challenges and potential location changes AND how to cope with the jealousy that may creep up... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our speaker this month addresses an important topic that affects many in our community. Elizabeth Pendo is the Kellye Y. Testy Professor of Law and Senior Associate Dean for Academic Affairs at the University of Washington School of Law, and... Read More »
Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support,... Read More »
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 Chris Haven Chris Haven, from the Pacific Northwest chapter, will share her experiences working out with Alex Walker, a personal trainer and strength coach. She will share a video and discuss her... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art,... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Mitch Wade, a fitness trainer from Portland, Oregon, is a legend in the FSHD community for his understanding of FSHD and results he has achieved with clients to help restore strength, range of motion, and function. No one can reverse... Read More »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is entering the era of new therapies, Kelly Maynard, President and Founder and Amy Aikins, Director of Patient Access from the Little Hercules Foundation, will give... Read More »
2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
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... Read More »
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 Join Trish Kean for a session of Shaking Qigong. Shaking helps us to open up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body.... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT UPDATE: We have reschedule for October 9 due to Rosh Hashanah falling on October 2 this year. After a move or new environment, we have to adjust to a new environment, including costs for personal... Read More »
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the challenges presented by your FSHD? Perhaps you use your wheelchair as a fork lift, or have a grabber in every room of your house, or... Read More »
9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland of the University of Kansas Medical Center and FSHD CTRN. This is a historic time in FSHD, with new treatments on the horizon. Do you... Read More »
