FSHD Tissue Registry FAQs

ndri_brochurecoverThe FSH Society is excited to announce the launch of the FSHD Biospecimen Registry, the first nationwide Facioscapulohumeral Muscular Dystrophy tissue registry. The registry, created by the FSH Society in partnership with the National Disease Research Interchange (NDRI), establishes a way for patients to arrange to donate tissue in advance of surgery and postmortem, and ensures that the tissue will be delivered to qualified FSHD researchers.

Muscle and other tissues from FSHD patients and relatives are truly precious and vitally important for the advancement of research. It is extremely difficult for researchers to obtain this tissue. Without sufficient access to patients’ tissues and cells, scientists will not be able to fully understand the biological mechanisms of FSHD and test strategies to treat the condition. Continue reading

Walk & Roll to Cure FSHD

The FSH Society’s Colorado Committee hosted their first ever local fundraiser on Saturday September 10, 2016 – a 5K WALK & ROLL at Phillip S. Miller Park in beautiful Castle Rock, Colorado!

Thanks to all of our participants, sponsors, and donors, we are proud to say we generated nearly $19,000!

Walk & Roll to Cure FSHD

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Antisense technology muzzles DUX4

The cause of facioscapulohumeral muscular dystrophy (FSHD) is thought to center on DUX4, a gene that normally is silent in adult skeletal muscle. When DUX4 gets “expressed,” as happens in FSHD, it activates other destructive reactions in muscle cells and causes muscles to degenerate. Suppressing DUX4 is a logical strategy to treat FSHD, and a new study suggests that this may be achievable using “morpholino antisense oligomers,” a type of synthetic molecule that blocks specific DNA sequences. Continue reading

Cool technology: Elevating walker chair

We’re excited to see this ingenious concept for a mobility device. It’s being developed by Garrett Brown, inventor of the steadycam. Shown trying out a prototype is Alan Brown, who has FSH muscular dystrophy. Alan organized the Musclepalooza fundraiser last year. Thanks to David Garden for sending us this video.

Meet our newest Board of Directors members

The FSH Society Board welcomes two new members, who were elected at the May 2016 Board meeting. They bring considerable business, financial, governance, and marketing knowledge with them, along with the deep commitment that comes from having loved ones who are affected by FSHD.

ChristineFord

Christine Ford

Christine Ford is a business graduate of California State University, Sacramento. She earned her CPA license in 1984 and worked as an auditor with the California State Auditor. She then moved on to various management positions with the California Lottery and the California State Teachers’ Retirement System, where she was the CFO and then chief of staff. Chris serves on the finance committee for the FSH Society. Continue reading

Cyndie Abelman Memorial Fundraiser

A message from Steve Abelman:

It is hard to believe that nearly two years have gone by since Cyndie Abelman’s passing. Not a day goes by where her two beautiful daughter’s (Rebecca and Anna) and I don’t miss her dearly! To help enhance her memory and to raise money for an important cause that continues to impact the lives of so many on a daily basis, please consider a donation to the FSH Society to help my daughters and others find a cure! Cyndie was a generous and caring individual and this is exactly what she would ask, albeit in her quiet and respectful style! Continue reading

Chipotle Fundraiser in Castle Rock, CO

Eat For Change_ChipotleMake dinner a selfless act by joining us for a fundraiser to support the Walk & Roll to Cure FSHD!

Just come into the Chipotle at 5642 Allen Way, Space 104 in Castle Rock, CO on Tuesday, September 13th between 5pm and 9pm MT. 

Be sure to bring THIS FLYER or show it to the cashier on your smartphone. The FSH Society will get 50% of all proceeds from each purchase using this flyer!

Video diary: Ryan Levinson

FSH Society Ambassador Ryan Levinson just transmitted this video from his berth in Fakarava, a tiny atoll in the Tuamotu chain of French Polynesia! He shares how he has adapted his movements to get around his sailboat. FSH muscular dystrophy won’t stop him from living his life to the fullest. Read more about Ryan here. What tricks have you come up with to adapt to muscle weakness so that you can keep doing the things you love?

FSH Society commits over $1.38 million to research in 2016

Grants approved from February 2016 cycle set new record.

While Katie Ledecky was smashing world records at the Olympics, we set one of our own!

While Katie Ledecky was smashing world records at the Olympics, we set one of our own!

The FSH Society has committed $648,774 in funding to five research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants bring the total research funding committed by the FSH Society in 2016 to $1,383,692, a 44 percent increase from 2015, and a new record for the Society.

“These grants reflect the high quality and ambition of grant applications submitted to the FSH Society,” said Daniel Perez, President and CEO of the FSH Society. “None of this would be possible without the past years’ growth in the Society’s revenue, fueled by the generosity of donors at every level and the hard work of FSH Society staff, Board members and fundraising volunteers.” Continue reading