Written by Beth Johnston, Development Officer at the FSH Society
When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his body), we couldn’t pronounce the disease, let alone understand what it all meant for our family. I discovered the FSH Society several years later (thank goodness) after moving from Denver to New York – and began the journey of discovery and hope.
Fast forward 16 years, 2 kids later, and we are back in Denver. One thing that has kept me hopeful and sane during these years is the camaraderie of patients and their families and friends – all working together to raise funds, raise awareness, and share helpful information with one another. Continue reading
The FSH Society is looking forward to seeing you!
If you live in the New England area or even just happen to be visiting, we’d love to have you stop by our office on March 7, 2017, between 5 and 7pm for our Spring Open House!
We’re very excited to show you our new office space. We have made lots of improvements with our move: cabinets for all the brochures we send you, a fridge that’s larger than the microwave, a conference room with a projector so we can talk to Beth in Colorado, and full desks for Kate and Robyn who were previously working off folding tables. This new space is part of a new chapter for the Society, as we strive to grow as an organization to better serve you and reach our goal of finding a cure for FSHD. Continue reading
Meet Steven Blier, Sarah Geissler, and Chris Stenmon, three remarkable individuals with FSH muscular dystrophy who spoke about their dreams and personal challenges at the 2016 CureFSHD Gala. Interviewed by WBUR Morning Edition host Bob Oakes.
by Amy Tesolin-Gee, Midland, Michigan
Several FSHD patients, family members, and FSHD-experienced clinicians came together in Ann Arbor on June 4, 2016, for an educational meeting including lots of helpful, informal discussion time. Many people traveled a good distance, and some drove from as far away as northern Michigan and Columbus, Ohio.
Lynnette Rasmussen and Laura Damschroder shared invaluable lessons learned during their four-year experience working together—Laura, as a patient with FSHD, and Lynnette as a certified Pilates and occupational therapist. Their experience has revealed an effective approach to finding muscles Laura had thought were lost. Lynnette has explored ways to target lost muscles to maximize Laura’s independence and mobility. Continue reading
The FSH Society’s 2016 Patient Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM) at the Westin Copley Place Hotel in Boston, Massachusetts. The conference brought together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. Download the Patient Connect program here.
Presentations and breakout sessions slides can be downloaded by clicking on the highlighted titles* below:
- FSHD Science 101. Alexandra Belayew, PhD (VIDEO)
- Genetics and genetic testing. Silvere van der Maarel, PhD (VIDEO)
- How FSHD affects your body and health. Kathryn Wagner, MD (VIDEO)
- Getting to know you. Claudio Ordonez, MD (VIDEO)
- Treatment strategies (panel): Peter Jones, PhD; Yi-Wen Chen, PhD; Scott Harper, PhD (VIDEO)
- Getting ready for clinical trials. Jeff Statland, MD (VIDEO)
- Clinical trials: current and impending. Rabi Tawil, MD (VIDEO)
- FSHD tissue donation registry. Denee Tidwell (VIDEO)
- Physical Therapy & Exercise (Katy Eichinger, PhD)
- Respiratory health (Nicholas Hill, MD)
- Living well: Life with FSHD (Ora Prilleltensky, EdD)
- Loving well: Living with a person with FSHD (Isaac Prilleltensky, PhD)
- Pregnancy & women’s health (Kelly Minks, MS, CGC)
- Waking up your muscles (Lynnette Rasmussen)
- Managing pain & chronic fatigue (Katy Eichinger, PhD)
- For the newly diagnosed & mildly affected (Carol Birnbaum, MD)
- Living well and loving well: Meeting everyone’s needs (Ora Prilleltensky, EdD & Isaac Prilleltensky, PhD)
*If a talk is not highlighted, the slides are not yet available.
The program agendas for our FSHD Connect conferences are now available to download. Please click on the links provided below. We thank our generous sponsors for their support!
Ever since joining the FSH Society’s Board of Directors, Abilene-resident Wendy Shack has been hoping to gather the region’s FSHD patients and families for a meeting. Last Saturday, she saw the fruits of her efforts with the first Dallas FSH Society member get-together, held at the aLoft Las Colinas Hotel in Irvine, Texas. Skylar Conover, an FSH Society ambassador and current Ms. Wheelchair USA, joined the meeting via Skype. Continue reading
The Los Angeles FSHD Connects group will be meeting on Saturday, February 13.FSH muscular dystrophy can weaken muscles involved with breathing, so we invited Chris Anderson, a music therapist who uses vocal training methods for people with neuromuscular conditions, to share her insights and methods. Check out our Event listing for details.
Elm in the Sun, by Amy Bekier
FSH Society Board member Amy Bekier is organizing an FSH Society booth at the 2016 Los Angeles Abilities Expo (February 5-7) on the theme of artists living with FSHD. Creative artists of all genres are welcome to join our booth. It’s a great opportunity to represent their talent to thousands of attendees. Admission is free so invite your friends and family. Adaptive equipment & technology, food, music, dance, sports, therapy animals and workshops. Something for everyone!
Artist exhibit space at our booth is limited so act fast. Contact Amy Bekier by email or at (619) 972-0993. Visit the Los Angeles Abilities Expo website for information and directions.
On November 4th, fourteen members of the Sacramento FSH Society Support Group met at Louie’s restaurant for lively discussion, fun and good Chinese food. We were joined by John Dorsett, M.D. of the University of California, Davis Medical Center’s Department of Physical Medicine and Rehabilitation. Dr. Dorsett was there to answer questions from the group on mobility issues. Continue reading