Our Forums moderator Kevin Schaefer shared great advice for making the most out of your time while at home. To discuss, add more recommendations and leave your feedback please join the conversation in our Forums: click here. 1) Read: “Netflix and Hulu are great, but nothing gets your mind going…
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With the holiday season in full swing, it’s the perfect opportunity to take a look back at 2017. It’s been a year full of ups and downs, and while there were definitely quite a few low moments, there were certainly quite a few highs. To celebrate the year that was,…
In this video from Gawker, Rich Juzwiak talks to comedian Steve Way about how having muscular dystrophy affects his life and how it impacts his comedy. MORE: Cyclists ride from Seattle to New York for facioscapulohumeral muscular dystrophy Way talks about the misconceptions people have…
These videos show how people living with muscular dystrophy (MD) can smash the stereotypes associated with having a disability, and lead rich and full lives. First up is 35-year-old Michael Klinkhamer, who has Becker muscular dystrophy. In this video shared by Story Hive, Michael explains that he spends all his…
Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage…
In this super cute video from WatchCut Video, children of various ages meet a man living with muscular dystrophy and ask some candid questions about his life with the condition. MORE: Talking to family members about your child’s neuromuscular disorder Amine talks about how having…
According to The Morning Call, 23-year-old DeSales University graduate Derek Szena desperately wanted to visit Disney World, but the cost of getting there and taking the nursing staff that he needs with him would cost more than $15,000. MORE: Find out what it’s like to live with a…
Austin Pinkerton may have muscular dystrophy but that hasn’t stopped him from enjoying his favorite sport, basketball. According to WHNT19 News, the senior at Hazel Green High School is the manager of the school’s varsity boys basketball team, the Trojans. MORE: High school teen Bryan Arnold from Anchorage…
Most 3-year-olds only get to watch marathons from the sidelines or on television, but not Levi Gagner. The Rare Disease Report revealed that Levi, along with his dad Kyle, completed the Rock ‘n’ Roll half marathon earlier this year. The Pheonix, Arizona event is the third race the two have competed…
As boys with Duchenne muscular dystrophy get older, their disease progresses and it’s likely that their emotional response to the disease will change over time. It’s perfectly natural for Duchenne MD patients to experience frustration, anger, self-pity and anxiety regarding their condition, but there are ways that you can help…
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