Strengthening our network in the Midwest
The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research advances with patients and families in the region. Patients and caregivers shared their observations and experiences of living with FSHD. Continue reading
Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson.
Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional opportunity to hear from pre-eminent FSHD researchers including Peter Jones, PhD, and John Day, MD PhD, about clinical trials and cutting-edge research. There will also be a wealth of “news you can use” about physical therapy, respiratory health, FSHD care standards, orthotics, and navigating the legal and insurance systems.
Following the conference, stay on for our annual benefit concert, a magical evening showcasing the esteemed pianist and song meister Steven Blier, joined by rising stars Amanda Lynn Bottoms and Dimitri Katotakis. You will enjoy a delicious dinner and dazzling silent and live auctions, presided over by our master of ceremonies, Emmy Award winning radio & TV personality Liam Mayclem, best known as the host of EYE ON THE BAY on KPIX 5 and as “The Foodie Chap.”
Jewish Community Center of San Francisco
3200 California Street
San Francisco, CA 94118
Disclaimer:This is not a program of the JCCSF. The views expressed are those of the FSH Society and/or its affiliates and guests.
Matthew Harms MD
The FSH Society’s March 11, 2017, meeting in Manhattan was a milestone in our efforts to nurture a network of stakeholders in one of our most concentrated urban centers. Hosted by FSH Society Board member Stuart Lai, this meeting featured two stellar speakers, Matthew Harms, MD PhD, of Columbia University College of Medicine, and Jia-Ray Yu, PhD, a postdoctoral fellow working in the world-renowned laboratory of Danny Reinberg, of the Howard Hughes Medical Institute at New York University Langone School of Medicine.
Two dozen patients and family members from New York City and beyond attended. For many, it was their first time meeting others with FSH muscular dystrophy. Continue reading
Race Across America fundraising for FSH muscular dystrophy
June 15, 2017 from 4:00 – 7:00 pm
Urge Gastropub & Whiskey Bank
2002 S Coast Hwy, Oceanside, CA 92054
Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download RAAM Fundraising Toolkit. Once you have collected the donations, please mail to FSH Society at 450 Bedford Street, Lexington, MA 02420 along with donor information.
Learn more about Team FSHD Cycling here!
Volunteers & Committees forming now for:
Raffles, Auction Items, Media contacts, Donations, Sponsors, Graphic Design
Contact: Amy Bekier at firstname.lastname@example.org or (619) 972-0993
PLEASE NOTE: WE ARE CURRENTLY TESTING THE FORM BELOW.
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!