Tag Archives: FSH muscular dystrophy

Search for Chief Executive Officer

The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed towards treatment and cure of FSHD; and to act to bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities.

Please review the CEO Position Announcement for further details. If you wish to apply, please send your resume and cover letter to Susan Egmont, Egmont Associates.

 

Looking Back on a Year Full of Strength, Part 3 of 3

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As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1 and Part 2 on our blog, we are sharing stories we received throughout the year from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society – and with your continued dedication to finding a treatments and a cure.

Continue reading below to hear the stories of Ryan, Aditya, and Lynne on how they are raising awareness, doing what they love, and how the Society has helped them along the way!

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Looking Back on A Year Full of Strength, Part 2

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As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.

Your support is life-changing to those in the Society and with your continued dedication to finding a cure, we know that this challenge is possible. Continue reading below to hear more from Kristen, Tom, and Zabrisa on how they are raising awareness, doing what they love and how the Society has helped them along the way!

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#GivingTuesday is Just Around the Corner!

Join us on Tuesday, November 29, 2016 as we participate in the fifth annual #GivingTuesday!

Giving Tuesday Save the Date

Entering its fifth year, #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities around the world join together with the common goal of encouraging giving to a worthy cause.

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We Want You to #ShareYourVictory!

VictoryAt 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! Continue reading

What Would You Like to #AskTheResearcher?

Research

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 – – no later than November 8th!

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.

Carden and Spencer Wyckoff to Set off on Piggyback Adventure through the Appalachian Trail

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.

piggyback adventures

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.”

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The FSH Society Issues Six Research Grants

Today, the FSH Society announced that it has awarded six grants totaling more $609,525 to new research projects. Through these studies, the FSH Society’s fellowship program aims to gain insights and achieve significant milestones into the research of FSHD, one of the most prevalent types of muscular dystrophy.

Research grants most recently awarded by the FSH Society include:  Continue reading

Twitter blows up for Phil’s Jam

The first annual “Phil’s Jam for FSH” drew a crowd of music lovers to the Wild Wing Cafe in Franklin, Tennessee, last night. Using the occasion to generate awareness about FSHD, the Society found a donor who agreed to give $1 for every Tweet and Facebook share about the event during a 24-hour period, up to a total of $500. The campaign met with an enthusiastic response, with over 650 tweets containing the hashtag #fshd. The event featured popular Nashville singer-songwriters Anna Johnson and Maureen Murphy. Surprise appearances by NBC’s The Voice alums Destinee Quinn and Allison & Krystal Steel of 2Steel Girls!! Check out the photo gallery: