Category Archives: FSHD Stories

Barbara Chin leaves an enduring legacy

Barbara A. Chin (1945-2016)

We at the FSH Society were deeply moved and inspired to receive yesterday a magnificent bequest of $50,000 from the Barbara A. Chin Trust. This gift will enable the Society to fund work that Barbara cared deeply about: education and support for people with FSH muscular dystrophy, like herself and her late son Jimmie, and research toward treatments and a cure.

Barbara and her husband Jim, who serves on the Society’s Board of Directors, have supported the Society not only financially but through countless hours of volunteer service. Barbara changed the lives of many patients and families through her peer counseling. The entire FSHD community owes her so much. 

Barbara’s bequest helps ensure that future generations will enjoy lives free of the burdens of this disease. Individuals and families even of modest means can leave a powerful legacy by including the FSH Society in their will or estate plans. Continue reading

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

email-header_inspiration

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

Hope

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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Waking up your muscles with Lynnette Rasmussen

by Amy Tesolin-Gee, Midland, Michigan

Several FSHD patients, family members, and FSHD-experienced clinicians came together in Ann Arbor on June 4, 2016, for an educational meeting including lots of helpful, informal discussion time. Many people traveled a good distance, and some drove from as far away as northern Michigan and Columbus, Ohio.

Lynnette Rasmussen and Laura Damschroder shared invaluable lessons learned during their four-year experience working together—Laura, as a patient with FSHD, and Lynnette as a certified Pilates and occupational therapist. Their experience has revealed an effective approach to finding muscles Laura had thought were lost. Lynnette has explored ways to target lost muscles to maximize Laura’s independence and mobility. Continue reading

Looking Back on A Year Full of Strength

As we look back on the incredible year we have had, we want to acknowledge those who have shared their inspirational stories, strength and commitment to continue to do the things that they love. 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 people like Kelly, Amy, Jeremy and Lilia! They’ve shared their victories with us through our #ShareYourVictory campaign. We encourage you to share your own victories by including the hashtag #ShareYourVictory in a tweet or Facebook post.

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Living with FSHD: Katy Kat in the Hat (Video)

Ellen Feldman, filmmaker, created this documentary about a woman she met who has FSH muscular dystrophy. “Katy Kat in the Hat is a story about a woman who defies all odds after being diagnosed with FSH muscular dystrophy at the age of 21,” Feldman said. “Katy’s muscles may be weakening but her spirit becomes stronger. Despite her degenerating condition, she continues to find new solutions to live her life full of adventure in the Colorado Rocky mountains. She surrounds herself with nature, music, animals, and good friends everywhere she goes. She takes every problem and turns it into a challenge. Katy Kat in the Hat is so full of adventure, when you first meet her you will think she is a character straight out of a Doctor Seuss book.”

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

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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