Category Archives: FSH Society News

Make an Impact This World FSHD Day With Our Orange Slice Selfie Campaign

The FSH Society is excited to celebrate the Second Annual World FSHD Day and join the global effort to raise awareness to FSHD this June 20th. To build upon last year’s success, we’re calling upon you—our biggest supporters—to spread the word!

We ask that you join us along with members of FSHD Champions in participating in our Orange Slice Selfies campaign. With orange as the official color of World FSHD Day, we’re asking that supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay.

Download World FSHD Day Toolkit here.

Additionally, we encourage supporters throughout the country to reach out to their local Department of Public Works in an effort to light up notable landmarks (bridges, buildings) orange in honor of patients and families. With Boston’s famed Zakim Bridge set to be lit orange on June 20, we would be thrilled to have the country from coast to coast lit orange!

Within this year’s 2017 World FSHD Day Toolkit, you will find example social posts to share your selfies, an email template to share Orange Slice Selfie photos with reporters at your local newspaper, and materials to assist in contacting your local Department of Public Works to light up your local landmark orange.

Please find an editable Word document of the toolkit below, and don’t forget to share your photos with us using #WorldFSHDDay on June 20! Please feel free to contact us at info@fshsociety.org with any questions.

Download World FSHD Day Toolkit here.

Spring $50K matching gift challenge!

Your donations are vital for helping the FSH Society overcome its challenges and meet its goals. We must invest in deciphering FSH muscular dystrophy so that we can aim treatments at the correct targets, even as we build the infrastructure to ensure that clinical trials will have meaningful results. A group of generous benefactors has pledged to match your donations up to a total of $50,000 during our spring campaign. Help us rise to this fundraising challenge and make a gift now.

If your company matches donations, you could quadruple your impact!  Continue reading

FSH Society grant award for myostatin study

Belgian Blue cattle are ripped, thanks to a mutation in their myostatin gene. Photo credit: https://commons.wikimedia.org/w/index.php?curid=1702186

In April, the FSH Society awarded Julie Dumonceaux PhD, or University College London, Institute of Child Health. a grant of $9,659.43 for one year for a project aimed at better understanding patients’ response to a class of drugs called myostatin inhibitors.

These drugs, such as Acceleron’s ACE-083 which is currently in a clinical trial in FSH muscular dystrophy patients, target myostatin, a molecule that the body produces naturally to inhibit muscle growth. The rationale for blocking myostatin is to enable muscle to achieve greater mass than it otherwise would. In conditions such as FSHD, where muscle mass is lost, a myostatin inhibitor would in theory enable muscle to re-grow without having to fight an uphill battle against the growth-blocking effects of myostatin. Continue reading

Help us promote World FSHD Day with a selfie video!

JUNE 20th is WORLD FSHD DAY!

World FSHD Day


Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. Orange Slice SmileRaisingAware

Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is make a short video of yourself sharing the message using the script below. Feel free to adapt the script to your own style and voice. Try to get good audio quality, then send your video by DropBox to June.Kinoshita@fshsociety.org. Continue reading

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

FSH Society Awards $541,133 in Funding for FSH Muscular Dystrophy Research

Boston-based Non-profit Awards New Grants to Facilitate Search for a Cure

BOSTON – April 5, 2017 – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced it has committed $541,133 in funding to five research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record breaking $1.36 million awarded in total research funding in 2016.

“These grants are a testament to the dedication of researchers within the FSHD community committed to understanding and solving how FSHD works through high quality peer-reviewed research” said Daniel Perez, President and CEO of the FSH Society. “With these grants we look to build upon our record-breaking success in 2016, which would not have been possible without the generosity and sustained support of donors, Society management and staff, our Board members and volunteers.”

The following proposals submitted in August 2016 were approved: Continue reading

FSH Society Talk Radio launches first episode

FSH Society Talk Radio host Tim Hollenback

We have launched a new service for our members, an internet radio show that will feature guest interviews and live on-air Q&A with our listeners. Hosted by Tim Hollenback, the show will stream live over BlogTalkRadio on the last Wednesday of every month, at 9:00 pm EST / 8:00 pm CST.Listeners can call into the live shows to ask questions and join a chat session with other listeners for real-time socializing, networking, and support. Episodes will be recorded and available as podcasts after the shows.

Listen to our pilot episode, an interview with FSH Society executive director June Kinoshita, who answers questions about current research, clinical trials, and the FSH Society’s role in supporting and educating the FSHD community.

FSHD patient survey results presented at MDA Conference

At the Muscular Dystrophy Association’s biennial scientific conference, held in Washington, DC, on March 19-22, 2017, researchers from Acceleron Pharma presented a poster about the most prominent symptoms and daily life impact of FSH muscular dystrophy, as reported by patients and caregivers. The report was based on results from a survey developed by Acceleron in collaboration with Dr. Jeffrey Statland of the University of Kansas Medical Center and June Kinoshita from the FSH Society. Researchers at aTyr Pharma also contributed comments on the survey design. Continue reading

FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis

Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis.

To watch the broadcast video clip, click here.

After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life. “It was very hopeless,” said Brchan. “They knew very little about the disease. There wasn’t anyone focusing on the disease. Basically, each year you find you lose more and more ability to lift, to walk.” Continue reading

Get our new Bach 2 Bowie T-shirt!

Our eye-catching T-Shirts, totes and mugs feature the Bach 2 Bowie logo from the Ghostly Gala, our annual Los Angeles-based event to raise awareness and funds to fight FSH muscular dystrophy, one of the most common hereditary muscle-weakening diseases. Just as music unites us, so does our care and concern for the health and well being of individuals and families affected by FSHD. Net proceeds support the FSH Society.

Deadline March 30. A minimum of 25 orders must be placed to trigger production. Your credit card will not be charged until then.

Order your Bach 2 Bowie items here.