Meredith Huml, director of the North Carolina chapter

Episode 30,   Dec 19, 2019, 03:05 AM

 guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a “disease she had never heard of,” Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not only come to turns with life with FSHD, she has turned her experience into a source of strength, to help others with disabilities. She shared her journey in her blog post: Finding strength in our pain. And now you’ll get to “meet” her on FSHD Society Radio.