Over the past 25 years, we have had countless ambassadors and researchers accomplish amazing victories—all to spread awareness of FSHD and to bring us one step closer to finding a cure.
At this year’s Inaugural CureFSHD National Gala on November 11, we look to celebrate not just the victories of our tireless researchers and fearless ambassadors, but also the small (yet no less important) accomplishments that individuals with FSHD experience every day.
To celebrate the strength of our Society, please share your own personal victory with us by sending your photos, videos, and stories to Beth.Johnston@FSHSociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #ShareYourVictory.
We’ll share your victories during the CureFSHD National Gala, and will also be celebrating your triumphs on our website and on social media. We can’t wait for you to #ShareYourVictory with us!
For the past 25 years, countless researchers have dedicated their time and energy striving to find a cure for FSHD. Thanks to the work of researchers like Dr. Jeffrey Statland, Dr. Rabi Tawil and Peter Jones, PhD (just to name a few!), we are a strong community filled with some of the brightest minds in science.
At this year’s Patient Connect Conference on November 11, we want to open the floor for you to ask researchers your questions. Do you want to know what they’re working on? What the next big breakthrough may be? Now is your chance. Please send your questions to Beth.Johnston@fshsociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #AskTheResearcher.
We’ll present your questions to the researchers during the Q&A session at the Patient Connect Conference. We’ll also be sharing the questions and answers on the FSH Society website and our social media channels after the event.
One hundred percent of net proceeds from this auction will benefit the FSH Society. That’s what we call a Win-Win!!
Note: The exact location of the seats will not be known until closer to the Super Bowl date.
We are taking bids in absentia on this extraordinary opportunity – you can do this by one of the following options:
You may provide the FSH Society with written instructions on your maximum bid and secure your bid by providing a signed proxy form by 12 noon EST, October 28th, 2016. The auction staff will bid on your behalf in increments above the next-highest bid until there is no one to out-bid you, or your maximum is reached, whichever comes first. If you don’t win the item, your deposit will be refunded in full.
Live bidding by phone. Provide a phone number where you can be reached at 8:00 pm PACIFIC TIME on October 30th, 2016. A member of the auction staff will call you when the live auction begins, and you can participate in live bidding. Be ready to provide your credit card payment information if you were to win.
FSH Society Ambassador Carden Wyckoff and her brother Spencer are at it again! This time, they will be traveling 79-miles through the Georgia portion of the Appalachian Trail to raise awareness and funds to cure FSHD.
Throughout the hike, sponsored by Vestigo, Spencer will be carrying his sister Carden on his back using a specially designed harness. Their father, Kurt, and sister, Virginia, are also set to join them on the adventure to spread the message that no matter what physical limitations are placed on you anyone can reach their goals.
“Being able to walk with someone on your back is an intrinsic reward,” says Spencer. “We are looking to prove that this journey, carrying someone on your back for 79 miles, is not impossible, and that Carden and others do amazing things themselves every day.”
(Via BusinessWire.) Acceleron Pharma Inc., a clinical stage biopharmaceutical company focused on the discovery, development and commercialization of innovative therapeutics to treat serious and rare diseases, today announced that it will host an educational webinar on facioscapulohumeral muscular dystrophy (FSHD) and the Company’s Phase 2 clinical trial of ACE-083 in FSHD patients. The webinar will be led by neuromuscular disease expert, Jeffrey Statland, M.D., M.P.H., and Acceleron management, at 10:00 a.m. EDT on Friday, October 28, 2016. Continue reading →
The laboratory of Peter Jones at the University of Massachusetts Medical School reports that Drosophila (fruit fly) lines for studying DUX4 and FRG1 overexpression are freely available worldwide from the Bloomington Drosophila Stock center under “Genes of interest for muscular dystrophy.”Continue reading →
Questions? Carden Wyckoff: 770-316-1900, or FSHDRSVP@gmail.com
Meredith’s home is wheelchair accessible with an accessible restroom. Though the driveway is fairly steep, the carport at the top of the driveway will remain open for drop-offs and pick-ups in front of the ramp entrance to the home. Parking is available on the street.