FSH Society Makes Notable Progress in Funding, Research and Patient Engagement in 2013

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After wrapping up what was a busy first month of 2014, the FSH Society finally has a moment to look back on 2013 and acknowledge what a busy – and successful – year it was!

Throughout 2013, the FSH Society expanded its networks locally and nationally, partnering with the University of Massachusetts’ Wellstone Center for FSHD Research and Training. The Society is proud to have participated in several FSHD studies as well, contributing to noteworthy developments in research of the disease. The non-profit organization took part in the discovery of the first disease-modifying gene for FSHD Type 1, which turned out to be the SMCHD1 gene that causes FSHD Type 2. Additionally, its funding of the first MRI studies on FSHD patients led to the publication of a PLOS ONE paper, which outlined the distinct disease phases in muscle of those living with FSHD. The Society is also thrilled to have partnered with SHIFT Communications, a Boston-based public relations firm, who is helping them build strategic PR and social campaigns to spread FSHD awareness.

The 19th FSH Society’s Annual International Research Consortium, held in October at MIT (Cambridge, MA) drew in a record number of attendees. The 20th annual research consortium will take place October 2014 in San Diego, CA. Check their website in the coming months for more information.

The acknowledgement of the organization’s achievements by the greater non-profit community was also notable. The FSH Society was honored with a prestigious 2013 Top-Rated Award by GreatNonProfits, the leading provider of user reviews about nonprofit organizations, and was also named one of “Ten Charities Worth Watching” by Charity Navigator, a leading national charity watchdog organization.

In 2013, the FSH Society raised a record amount – more than $1.7 million – a 22% increase over 2012. The Society also disbursed a record amount in grant funding ($541,000), as well as approximately $106,000 due on grants issued, as it continues raising funds to better treatment and find a cure. As 2013 drew to a close, the Society received a generous holiday donation of $10,000 from Adveq, a leading asset manager. The company was inspired by the courage of employee Angela Farkas in sharing her family’s journey with FSHD.

To maximize awareness and funds raised, the Society took part in several events throughout the year, including the 4th annual Celebrity Walk ‘n’ Roll (Irvine, CA); the 5th annual Cape Cod Walk ‘n’ Roll for FSHD (Harwich, MA); the 2nd annual Hustle for Muscle Golf Tournament (Abilene, TX); the annual Festive Evening of Song, which featured pianist Steven Blier and Broadway veteran Judy Kaye (New York, NY); and a lakeside fundraising event hosted by Michelle Mackay and retired Kellogg’s CEO David Mackay (Gull Lake, MI). The FSH Society will participate in following 2014 events:

  • Phil’s Jam for FSH: February 26 – Nashville, TN
  • St. Patty’s Dining for Charity: March 17 – Rancho Bernardo, CA
  • Festive Evening of Song: September 29 – Tarrytown, NY
  • Celebrity Walk ‘n’ Roll: October 12 – Irvine, CA

As the FSH Society look forward to what’s sure to be a productive and momentous 2014, it would like to thank its members for their continued support. For additional information regarding any of the research, awards or events included above, please contact the FSH Society directly.

About the FSH Society
The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For five consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than four percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

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June Kinoshita

Katherine Bragg
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