FSHD Stories

  • Mika Mae’s story - Editor’s note: Mika Mae Jones passed away in June 20, 2019, at age 32 after sustaining severe head trauma from a fall. The FSHD community mourns her tragic loss. She wrote this essay for us shortly before her death. We publish it in her honor and memory. With fellow FSHDer, Alexandrea Comstock, Mika Mae co-founded … Read more of "Mika Mae’s story" »
  • Webinar: About CBD and medical marijuana - Our next webinar, scheduled for Wednesday, September 11, from noon to 1 PM EST, addresses a topic that is much discussed in our Facebook communities: cannabidiol (CBD) and medical marijuana. With the spread of legalized medical marijuana and the passage of the 2018 Farm Bill that made CBD legal in all 50 states, it’s a … Read more of "Webinar: About CBD and medical marijuana" »
  • Tips & tricks – the Travel Scoot - By Bill Maclean, Blue Bell, Pennsylvania A few years ago, I purchased a Travel Scoot, and it has been an excellent investment. I use it for any distances and it has traveled the world with me. It is great for going to the mall for shopping and any type of event that requires some walking. … Read more of "Tips & tricks – the Travel Scoot" »
  • First Meeting of FSHD Israel - by Haviva Ner-David This past August 9th was the first official meeting of FSHD Israel, initiated by my 18-year-old daughter Hallel after we represented Israel in the first International FSHD Conference in Marseille in June. We were an intimate group of twelve – some FSHDers (including myself) and some our partners and/or care takers – … Read more of "First Meeting of FSHD Israel" »
  • The journey of a forensic psychologist - by Heather Green There are moments in every life that are defining. We can live weeks, months, and years sometimes without having anything memorable happen, then in a flash, our lives are forever changed. These moments create memories that are seared into our brains. Psychologists call these “flashbulb memories,” and these events, when remembered come … Read more of "The journey of a forensic psychologist" »
  • USA Today features Carden Wyckoff - Those of us who spend (too much) time on Facebook may recall the envy-inducing photos posted last summer by Carden Wyckoff as she traveled solo with her wheelchair across Europe. Her story caught the attention of a reporter, and is now featured on USA Today!  “Wyckoff hopes her trip will encourage more people with disabilities … Read more of "USA Today features Carden Wyckoff" »
  • Tips and tricks – The Stand Aid - Here’s a solution to a delicate problem: the Stand Aid PTA, or power-toilet assist. Several of our members have raved to us about this “life-changing invention” that restores independence and dignity to those whose weakening muscles make it challenging to rise from a toilet seat after answering nature’s call.  According to the company’s website, “The … Read more of "Tips and tricks – The Stand Aid" »
  • Generic image of pills NAD+ supplementation may help aging muscle - Could it be helpful for FSHD? BY AMANDA HILL, HIGHLANDS RANCH, COLORADO  In the current absence of a treatment for FSHD, many patients experiment with a variety of lifestyle or diet changes, supplements, naturopathic medicine, or other types of treatments to help alleviate and cope with disease symptoms. In recent years, several laboratory studies have … Read more of "NAD+ supplementation may help aging muscle" »
  • Art lets me grow - By TIffany Zimmerman, Deltona, Florida I don’t think any of my work as an artist really focuses on my having FSHD. I do feel, however, that my art and creativity are among the major things in my life that keep me mentally balanced and uplifted. One of the hardest things about dealing with FSHD is … Read more of "Art lets me grow" »
  • More than meets the eye (and ear) - by Jenny Hasenjaeger, Bennet, Nebraska Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes, and those on the listening end have been loving every note. Accentuating his singing talent are his skills on the piano, violin (wife, … Read more of "More than meets the eye (and ear)" »