Tag Archives: FSH Society

Help us promote World FSHD Day with a selfie video!


World FSHD Day

Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. Orange Slice SmileRaisingAware

Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is make a short video of yourself sharing the message using the script below. Feel free to adapt the script to your own style and voice. Try to get good audio quality, then send your video by DropBox to June.Kinoshita@fshsociety.org. Continue reading

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


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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#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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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.”

Continue reading

Atlanta Kickoff Event October 15th, 2016!

If you live in the Atlanta area, join us for a casual dinner and cocktails as we begin planning our next fundraising event!

Atlanta Gathering InvitationThank you to Meredith & Mica Maddry who have agreed to host our get-together at their home:  1423 Lachona Ct. NE Atlanta, GA  30329

SATURDAY, OCT 15th, 2016 at 7PM

Please RSVP to FSHDRSVP@gmail.com, or use THIS LINK.

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.

Contribute to this event HERE.

See you there!

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!