Featured post

Steven Blier and Julia Bullock Perform to Benefit Muscular Dystrophy Research

Julia Bullock, by Christian Steiner

Julia Bullock, by Christian Steiner

We’re excited to announce the second annual benefit concert, “Songs in the Key of Steven Blier,” on Friday, July 17 at the Marines’ Memorial Club in San Francisco. The evening will start with a reception and silent auction, followed by dinner, a live auction and concert, featuring renowned pianist Steven Blier and the celebrated soprano, Julia Bullock. The benefit is open to the public, with Gala tickets starting at $150 and VIP tickets at $250. All proceeds will go to the FSH Society.

Steven Blier, who was diagnosed with FSHD as a child, is a renowned pianist and Master Coach to the San Francisco Merola Opera Program. He co-founded the New York Festival of Song, one of the highlights of New York City’s cultural scene, and has taught for many years at the famed Juilliard School of Music. He played an active role in training and encouraging former students, such as Joseph Kaiser, Sasha Cooke and Kate Lindsey, as well as toured and performed with opera superstars like Renée Fleming, Cecilia Bartoli and Jessye Norman. Continue reading

Featured post

Clinical Trial Readiness for Facioscapulohumeral muscular dystrophy


Attendees of the Second FSHD Trial Preparedness Workshop, Rochester, NY

The FSH Society is co-funding the second FSHD Trial Preparedness Workshop. The Workshop, held from May 29-30, 2015, at the University of Rochester Medical Center in Rochester, New York, will convene more than 50 stakeholders from around the world, including representatives from industry, the Food and Drug Administration, National Institutes of Health, and patient advocacy groups, including the FSH Society.

“For this year’s Workshop, the first objective is to reassess where we are in the process of developing relevant clinical outcome measures, biomarkers and surrogate outcome measures for future FSHD trials,” said workshop organizer Rabi Tawil, MD, of the University of Rochester. “The second goal is to reach agreement on the most promising outcome measures to be pursued and identify gaps that remain. Finally, we hope to foster collaborations among investigators at different institutions to help accelerate the pace of research to fill those gaps.” Continue reading

Featured post

Setting a new record in our funding of research

In the first half of 2015, the FSH Society has awarded $485,840 in grants to new projects in facioscapulohumeral muscular dystrophy research. These projects were among a competitive group that was submitted in August 2014 for review by our Scientific Advisory Board. They include deep dives into how the genetics of FSHD affects the early development of muscle cells and into the lingering and all-important mystery of why muscle weakens in FSHD. Other studies will explore novel genetic and biochemical pathways that may be involved in FSHD.

With these awards, the Society continues to significantly expand funding for FSHD. In 2014, the Society funded a total of $819,261, a 24 percent increase over total funding in 2013. This year, we have set a goal of increasing our research funding to $920,000, a goal we hope to attain through the steadfast support of our members, fundraising event organizers and benefactors. We all owe them a tremendous debt of gratitude for their hard work and generosity.

For details on our grant awards, please click here.

Bone health for FSHD patients

Carla Grosmann, MD, of the Kennedy Krieger Institute and University of California San Diego gave this talk about bone health at the FSH Society’s Mid-Atlantic patient network meeting on June 27, 2015. We recommend listening through earphones as the audio did not record well. To download slides, click -> Carla Grosmann MD, Bone health in FSHD.

It you have questions for Dr. Grosmann, please post them in comments and we will forward them to her.

Join Our Los Angeles FSHD CONNECTS Meeting!

Saturday, July 18, 2015 1:00-5:00 pm
A Social Afternoon featuring June Kinoshita!

Ellen and Jeff Rennell’s Backyardbackyard picnic
3744 Moore Street, Mar Vista, CA 90066. 1:00-5:00 PM

A gathering for people with FSHD from the Los Angeles region, for networking, learning, advocacy and more! Organized by the FSH Society and the LA FSHD CONNECTS volunteers, the meeting provides opportunities for people to strategize about what our needs are as a group, whether it is physical therapy, caregiving, mobility aids, physician referrals, etc. We are creating a community of people who are connected by FSHD who wish to find support, answers, and empowerment.

Click here for more information about attending the event.

FSH Society Awarded Four-Star Rating by Charity Navigator for Seventh Consecutive Year

CharityNavigatorLogo-200pxAward indicates FSH Society outperformed most other charities in America

The FSH Society has received its seventh consecutive Charity Navigator four-star rating! Only two percent of the charities the Charity Navigator rates have received at least seven consecutive four-star evaluations.

Receiving four out of a possible four stars indicates that the FSH Society adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way. This rating differentiates the FSH Society from other organizations and demonstrates to the public that they are worthy of their trust.

“As the nonprofit sector continues to grow at an unprecedented pace, savvy donors are demanding more accountability, transparency and quantifiable results from the charities they choose to support with their hard-earned dollars,” said John P. Dugan, Continue reading

#FSHDSelfies campaign wins award

Accepting the Gold Bell award for SHIFT are (from left to right) Liz Ianotti, Jennifer Toole and Annie Perkins.

Accepting the Gold Bell award for SHIFT are (from left to right) Liz Ianotti, Jennifer Toole and Annie Perkins.

We have some good news to share. Last night members of SHIFT Communications, our pro bono PR/Marketing partner, attended the annual Publicity Club of New England’s Bell Ringer awards. The Publicity Club of New England is the region’s oldest not-for-profit public relations trade organization. The Bell Ringer Awards honor the superior work done by public relations and communications professionals across New England each year.

SHIFT submitted the #FSHDselfies campaign for the “Non-Profit Communications Campaign” and were the winners of the highest honor in the category – the Gold Bell. We congratulate SHIFT on this prestigious award and couldn’t be more proud to be associated with such a stellar team!!

Lake Party to raise funds for FSH Society

David and Michelle Mackay

David and Michelle Mackay

Join FSH Society Board member Michelle Mackay and her husband David on July 11 for their annual Lake Party fundraiser at their home in Hickory Corners, Michigan. Michelle is one of the 870,000 people worldwide who are coping with facioscapulohumeral muscular dystrophy on a daily basis, which has propelled her to become a vocal and active advocate in battling the disease, raising awareness, and generating much needed funds for research and patient support. The Mackay family will match all donations from this night’s special event. 

Click HERE to register or make a donation in support of this event!

Honorary Board’s Kelli O’Hara nabs Tony!

Twitter erupted in a frenzy of virtual applause and “it’s about time” tweets when Kelli O’Hara won the 2015 Tony Award for Best Actress in a Musical last night. It was her sixth nomination, this time for her widely acclaimed performance in “The King and I.” The FSH Society is so proud to have Kelli on our Honorary Board. She has performed at the Society’s Festive Evening of Song benefit concert and appeared in our public service announcement. Her happy Worm dance last night was just too cute for words!

Race for a cure!

Calling all racing fans! The FSH Society is headed for the big screen at the Indy 500 this weekend where we will launch a gift matching campaign. This Sunday at the 99th running of the Indianapolis 500 Mile Race at the Indianapolis Speedway we will unveil a new Public Service Announcement (PSA), which will air on a jumbotron to some 500,000 fans in attendance. The PSA features eye-catching portraits of FSHD patients and families and encourages fans to donate in support of finding a cure for FSHD. A generous benefactor will match donations to the Society during the Indy 500 weekend. You don’t need to be in attendance to support the campaign or share the PSA! You can get involved today. Give now and the first $3,000 in donations will be matched dollar for dollar!

Share the PSA today over your favorite social media channels to encourage others to join the campaign. You can simply copy and paste:  Watch @FSHSociety #Indy500 #CureFSHD PSA today and donate to have your $ gift matched! http://bit.ly/1AgEGvv

The #CureFSHD campaign takes to the Boston transit system

FSH Society MBTA 5 Posters_FINAL OL REVISED_LR-1_Page_4As part of its ongoing awareness campaign, #CureFSHD, the FSH Society has released five distinctive public service ads that will be displayed in 250 subways trains and buses across Boston during the months of May and June. One of these posters is shown above. People who see the ads are encouraged to take a photo and share it. We hope patients who see it will know they are not alone, and that many others will go home and look up #CureFSHD and learn about a disease they had never heard of before.

  • Share the PSA today over Twitter and Facebook to spread awareness and change lives: Watch and share @FSHSociety #CureFSHD PSA today to spread awareness and change lives: http://bit.ly/1JdoBsg

To find out more about supporting the FSH Society and the #CureFSHD campaign, go to: FSHsociety.org/curefshd.