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International facioscapulohumeral muscular dystrophy research conference in Boston


Westin Boston Harbor Hotel, site of the 2015 FSH Society International Research Consortium workshop

The FSH Society’s 2015 Facioscapulohumeral Muscular Dystrophy (FSHD) International Research Consortium and Planning Meeting will convene in Boston this year, on October 5-6. This meeting is the largest annual forum for research professionals and clinical researchers to share the latest findings in FSHD research. For more information click here.

Next New England member meeting November 8

New Hampshire in autumn.

New Hampshire in autumn.

Our next FSH Society member meetings for the New England region will be on Sunday, November 8, noon to 3PM. Kirsten Neves will be hosting us in the tasting room at her family’s craft beer business, Tuckerman Brewing Company of Conway, New Hampshire. Join us for potluck, socializing and strategizing! Details here.

New brochure on facioscapulohumeral muscular dystrophy

AboutFSHDCoverWe’re excited to announce the arrival of our new “About FSHD” brochure. Updated with the latest information on genetics, symptoms, diagnosis, patient care and more, this is your essential guide to understanding facioscapulohumeral muscular dystrophy, whether you have just been diagnosed or have lived with FSHD for years. The brochure includes a convenient medic alert card for you to carry in your wallet.

Join the FSH Society (if you are new) or contact us, and we’ll mail you a copy!

FSH Society seeks Board candidates

BoardroomTableThe FSH Society is seeking qualified candidates for its Board of Directors. The Society’s mission is to deliver treatments and a cure for FSHD by connecting all the stakeholders and promoting research through thought leadership, networking, and funding. The candidate should have a very strong personal commitment to our mission. The candidate should be highly collaborative and willing to contribute professional skills, networks and financial support to help advance the work of the FSH Society. We are seeking candidates with expertise in law (contract, nonprofit, general), financial accounting, fundraising, donor cultivation, marketing, impact investing, venture philanthropy, political advocacy.

If you are interested, or can recommend an individual who might be qualified, please contact Executive Director June Kinoshita at june.kinoshita@fshsociety.org, 781-301-6649.

Your Golden Ticket to Super Bowl 50

Screen Shot 2015-09-23 at 10.37.04 AMLive auction Saturday, October 3, 2015, 9:00 PM EST at Musclepalooza.

Two pairs of tickets to Super Bowl 50. Levi’s Stadium, Santa Clara, California, Sunday, February 7th, 2016

This is an extraordinary opportunity to bid on tickets to the most-anticipated Super Bowl ever. Musclepalooza host Alan Brown is able to acquire these in-demand tickets through his long-standing special relationship with the National Football League, as a director of project management at NFL Films. Tickets to this historic 50th anniversary game will be almost impossible to come by, so this auction is YOUR Golden Ticket opportunity to attend Super Bowl 50. One hundred percent of net proceeds from this auction will benefit the FSH Society. That’s what we call a Win-Win!! Continue reading

Webinar with Dr. Rabi Tawil

Thursday October 1, 2015
8:00-9:00 PM EST

RabiTawilThe FSH Society is delighted to host this webinar and Q & A session with Rabi N. Tawil, MD. Dr. Tawil is Co-Director of the MDA Neuromuscular Disease Clinic at the University of Rochester. He is the lead author of “Evidence-based guideline summary: Evaluation, diagnosis, and management of facioscapulohumeral muscular dystrophy,” the first such care guideline for FSHD, which was published this past July in the journal Neurology.

You can download and review the summary for patients in preparation for the webinar. Continue reading

Doug & Gracie on Philadlephia’s Fox29 News!!

This just in from Doug Craig’s Facebook page!

We were walking down Market Street in Philly and came upon the Fox 29 station. We decided to pitch our story, and after trying unsuccessfully to enter the building were given a phone number to call. I told them what our campaign was about and was informed that it would be discussed at the upcoming editorial meeting, which was to take place in 30 minutes. While eating a delicious Philly Cheesesteak at Sonny’s on Market St. with some new friends (Eddie and Christan) we received a phone call from reporter JoAnn Pileggi who found our story interesting and wanted to meet with us. She met us near Sonny’s, accompanied by her camera man Martin (please send me your last name) and for the next couple of hours we talked and drove around the area for filming. We had a wonderful time. The story appeared on the ten-o’clock news and we filmed it with my iPhone.

Ghostly Gala Tribute & Advertising Opportunities!

We’re super excited about A Ghostly Gala to Vanish FSHD, a Gatsby-themed Halloween costume ball on October 18, at the Cicada Club in downtown Los Angeles. We hope to see many of you there! Whether or not you can attend, you can support the gala through an advertisement or a tribute in our event program. This is a great way to honor someone special or to promote your business or interests. Tribute donations are 100% tax-deductible. Deadline September 24, 2015. Continue reading

Musclepalooza 2015 is coming!!

SuperBowl50_LogoSaturday, October 3, 2015, 6:30 pm – 10:30 pm
The Ellison’s Barn, 5441 Ash Road, Doylestown, PA

Admission is a minimum donation of $25 per person. Additional gifts, sponsorships and tribute donations are encouraged! 100% of net proceeds will go to the FSH Muscular DystrophySociety.

Music by Jesse Pierce, featuring Marc Irwin & Barry Heimowitz, Coldpheet, and John Beacher. Your host Alan Brown promises an evening of great music, food, beverages and more! You’ll have a chance to bid on some amazing auction items Continue reading

Be an Advocate to #CureFSHD

Trisha PictureBy FSH Society Ambassador Trisha Sprayberry

I’m sure everyone knows about the ALS ice bucket challenge: folks dousing themselves with icy buckets of water for ALS. This campaign took off nationally with some major celebrities dressing down and ice-bucketing themselves to rally the country and raise millions toward research on ALS.

Last summer, Max Adler, the actor from “Switched at Birth” and “Glee”, as well as honorary board member of the FSH Society, fronted the #FSHDselfies campaign. He was not just a spokesperson for FSHD and the FSH Society. Max has personally been affected, with family ties to the disease.

There are many reasons why one disease or cause gets the spotlight while so many others languish in the shadows. Even with Mr. Adler’s support and celebrity endorsement, it’s difficult for the FSHD community to have our voices heard and our cause supported. Continue reading

Watch DUX4 switch on in facioscapulohumeral MD muscle cells

In this amazing time-lapse video, as immature muscle cells (myoblasts) develop and fuse to form elongated myotubes, the nuclei inside the cells glow green as they express DUX4 protein, a key player in FSH muscular dystrophy. This video, recorded over 118 hours, was created by Dan Miller’s lab at the University of Washington for its 2015 Human Molecular Genetics publication. The Miller team designed a “nuclear turbo” green fluorescent protein (ntGFP) engineered to cause cell nuclei to glow green when the DUX4 protein is expressed in FSHD muscle cells. As green nuclei cluster and intensify in color, you can see the host myotube disintegrate in a demonstration of DUX4’s toxicity.

Amanda M. RickardLisa M. Petek and Daniel G. MillerEndogenous DUX4 expression in FSHD myotubes is sufficient to cause cell death and disrupts RNA splicing and cell migration pathways. Hum. Mol. Genet. (2015)doi: 10.1093/hmg/ddv315. 

This work was supported by the National Institutes of Health (NIAMS AR064197-01A1), the Friends of FSH Research, the FSHD Canada Foundation, Kacy Murray and the Anderson Family Foundation. Additional supplementary material and videos are available at HMG online.