The last one in

Volunteering for research, feeling the weight of responsibility

By David Lukas, Village of Lakewood, Illinois

DaveLukasI was diagnosed with FSHD in April 2015. In October 2015, I participated a clinical research trial in Rochester, New York, at the University of Rochester Fields Center for FSHD Research. I am the final participant for this study, which includes three visits to Rochester over the course of a year. What follows is my journal entry about my experience participating in this study. Continue reading

Raising awareness on highway billboards

FSH Society Electronic Billboard 880x264The state of Massachusetts has a program through which operators of electronic billboards must donate some space to nonprofits. We were able to obtain space by partnering with the Massachusetts Rehabilitation Commission. Our #CureFSHD billboards are now up and running on some 50+ electronic billboards across the state. If you spot one, please let us know!

If you live outside of Massachusetts, you can help by finding out if your state has a similar program of donated billboards. Contact your state’s department of transportation to find out. This could take some digging!

The Power of 25 – Our Spring Challenge Campaign

2016SpringCampaignBannerThis spring, we are launching our most ambitious annual campaign ever to mark this, our 25th year since Daniel Perez and Steve Jacobsen founded the FSH Society. Our goal: to raise $2.5 million by December 31, 2016. To reach it, we need to get off to the strongest start possible. Can you help us?

A group of generous benefactors has pledged to match members’ gifts up to a total of $25,000 if you make a donation by May 25th. Don’t let this opportunity pass you by!

Please take a moment to consider what the world would be like for you, your family, and loved ones living with FSHD if the FSH Society had not existed for the past quarter-century:

  • You would have no one to call or email for advice or support in a crisis.
  • You would not have access to timely, accurate information about FSHD.
  • There would be no FSHD care guideline to inform those who provide your medical care.
  • There would be almost no scientific research on FSH muscular dystrophy.
  • We would likely still not know the genetic cause of FSHD.
  • Biotech and pharmaceutical companies would not be investing in FSHD drug development and starting trials of potential drugs to treat FSHD.

Your world would be a lot grimmer—it would be a world without hope.

Through sheer determination and hard work by our founders and volunteers who serve on our Board of Directors, Scientific Advisory Board, and grassroots fundraisers and meetings, the FSH Society has persevered against staggering odds to survive, grow, and flourish.

We never take our existence for granted—and neither should you.

Our team works hard to raise every dollar and plow it back into research, education, and advocacy. Almost all of our funds come from members and supporters like you. We are deeply grateful to our loyal donors. Without them, the FSH Society would not be here today.

If you are someone who has never or rarely given, it’s not too late! Don’t take the FSH Society’s remarkable accomplishments for granted. Now, more than ever, we need your support on the most difficult march toward treatment and, someday, a cure.

Please honor—and celebrate—the FSH Society’s 25 years of dedicated effort by making a gift today. Your gift will be matched, dollar for dollar, up to $25,000 if made by May 25th.

With gratitude,
June Kinoshita
Executive Director
FSH Society

Save the Date! Third Annual Songs in the Key of Steven Blier

June 24, 2016, 6:30 PM – UPDATED!
Grace Cathedral, San Francisco

Steven Blier

Steven Blier

Please join the extraordinary pianist Steven Blier and baritone Theo Hoffman for a transcendent evening in one of San Francisco’s iconic spaces: Grace Cathedral. You will be treated to a world-class musical performance under the witty and erudite direction of maestro Blier in an awe-inspiring space cherished by generations of San Franciscans. Recital followed by wine reception.

We’d appreciate it if you could share this notice with family, friends and associates in the San Francisco Bay area. Thank you!

For tickets and sponsor opportunities, click here.

Grace Cathedral does not permit fund-raising activities on-site, so there will be no auction or fund-a-cure at the event this year. Instead, please consider becoming a sponsor or hosting a group of guests. Our sincere thanks for your support!

QUESTIONS? Please contact June Kinoshita by email or at 781-301-6649.

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

aTyr Pharma to advance Resolaris™ clinical programs

aTyrLogoThe San Diego-based biotech company, aTyr Pharma, Inc., released findings on March 30, 2016, from a Phase 1b/2 clinical trial of its experimental therapy Resolaris in adult facioscapulohumeral muscular dystrophy (FSHD) patients. While the number of patients in the study is small, the company stated that the favorable safety, tolerability, immunogenicity and activity profile of Resolaris as demonstrated in this study warrants advancing its clinical programs in adult FSHD patients and potentially other rare diseases. Continue reading

Good times! TD Garden Tournament

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Our first-ever basketball tournament, at Boston’s legendary TD Garden–home of the Boston Celtics–was a rousing success. Teams from Acceleron Pharma, SHIFT Communications, O’Connor Drew, Mouse Specifics, Social Sports Boston and Friends of Joel Desilets enjoyed vying with one another in knock out and free throw competitions as well as half-court games. Social Sports Boston won the playoffs, while Mouse Specifics claimed the Youth team trophy. Continue reading

FSH Society submits testimony to U.S. Congress

FSH Society President & CEO Daniel Perez has submitted his annual testimony to the U.S. House Appropriations Committee, Subcommittee on Labor, Health and Human Services, Education and Related Agencies (LHHSE). This year, the Society has requested $24 million FY2017 appropriations for NIH research on FSHD.  Identical testimony was submitted to the Senate.

The following table from the FSH Society’s testimony shows the progress being made in NIH funding for FSHD projects.

Screen Shot 2016-04-16 at 10.41.37 AM Continue reading

Publication highlights release of muscular dystrophy action plan

Screen Shot 2016-04-09 at 12.18.35 PMThe Muscular Dystrophy Coordinating Committee (MDCC), a congressionally authorized group of representatives from federal agencies and patient advocates, recently released an updated version of its Action Plan for the Muscular Dystrophies. FSH Society played a key role in the formation of the MDCC through its sustained advocacy work with the federal government, and Daniel Perez, President and CEO of the Society, serves on the MDCC as a voice for the FSHD community.

Continue reading