FSHD Stories

  • Finding beauty in disability- by AUBRIE LEE I have a disability. It has manifested differently throughout my life, I have felt differently about it in various stages of my life, and people have treated me differently my whole life because of it. I could walk when I was a child, and I transitioned to using a wheelchair over my … Read more of "Finding beauty in disability" »
  • Holiday gifts Holiday gift ideas- If you are scrambling for last-minute holiday gifts to delight the FSHers in your life, here are a few suggestions. We’d love to hear about your best holiday gift ideas in the comments section! Reusable drinking straws. While FSHD can make it hard for some to sip through a straw, many others rely on straws … Read more of "Holiday gift ideas" »
  • Freedom Through AFOs- by ROD FULMER, McDonough, Georgia Who wants to wear ankle braces? I wish I didn’t have to wear any, but because I need them, I’m glad I found carbon fiber braces that have worked very well for me. Mine are made by Allard USA, and I discovered them somewhat by accident. My sister and I were … Read more of "Freedom Through AFOs" »
  • Our Guide for Schools- The FSH Society’s Guide for Schools is available online for download and print here. You can also request a hard copy by emailing your request to info@fshsociety.org. Created by a team of national experts, this booklet provides information about FSHD and the impact the disease can have on students’ experiences during the school day. The … Read more of "Our Guide for Schools" »
  • Scooting around unconscious biases- by MEREDITH MADDRY, Atlanta, Georgia I have heard that to have an “executive presence” in business, one should stand tall, smile, and extend your arm for a firm handshake. Yet what if people in business can no longer stand, or smile, and are losing strength in their arms―should they give up the chance at a fulfilling … Read more of "Scooting around unconscious biases" »
  • Have you pulled down your oxygen mask?- by SUSAN W. AUMILLER, CLTC, Dublin, Ohio Recently I was sitting next to my husband on a flight to Nevada. I had buckled my seat belt and was casually listening to the flight attendants delivering their safety message. When I heard them say that I should put on my oxygen mask first, before helping the person … Read more of "Have you pulled down your oxygen mask?" »
  • Diane and Lexi Pappas Lexi Pappas’ story of filmmaking and FSH muscular dystrophy- Filmmaker Taylor Toole takes us inside the world of Lexi Pappas, a fellow documentarian who lives with a condition called facioscapulohumeral muscular dystrophy (FSHD). Last year, Lexi’s own documentary about her family’s four-generation journey with FSHD, went viral. Learn about the remarkable woman behind the camera.
  • Don Nemke’s Tips for Living with FSHD- by Don Nemke, Oro Valley, Arizona My name is Don Nemke and I’m 72 years old.  I’ve had symptoms of FSH Muscular Dystrophy starting 60 years ago and was formally diagnosed about 54 years ago.  I’m currently in an advanced stage of FSH and recently fully wheelchair-bound. As an older patient with FSHD muscular dystrophy I … Read more of "Don Nemke’s Tips for Living with FSHD" »
  • Listen up! Columbus TV news features our Walk leader- Check out this audio from an interview with Sue Aumiller, director of our Columbus Ohio chapter, with Mark Blazor from Columbus’s top local station, 610-WTVN. Mark read the Columbus Dispatch’s story about Sue and her family and felt compelled to call. When you open one door, others open too. Way to go Sue!
  • For newly (and not so newly) diagnosed people- We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get … Read more of "For newly (and not so newly) diagnosed people" »