Category Archives: Patient meetings

Our Manhattan Project

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

2017 RAAM Kickoff Dinner

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 or (619) 972-0993


Continue reading

Upcoming Denver FSHers Meeting: March 25th, 2017

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

FSH Society’s first Open House!

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

Waking up your muscles with Lynnette Rasmussen

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

2016 FSHD Patient Connect Conference

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:

*If a talk is not highlighted, the slides are not yet available.

In Dallas, many meet another with FSHD for the first time

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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