Greetings friends and family!
By now you are probably aware that about three years ago Justin was diagnosed with a type of muscular dystrophy called fascioscapulohumeral muscular dystrophy (FSHD). FSHD is most often diagnosed in the 20’s-30’s and typically begins with skeletal muscle degradation in the upper body, which progresses to the legs (most people eventually need a wheelchair or some form of assistive walking device), and sometimes affects other organs, such as the eyes and heart.
Justin and I went through a very difficult period in the time leading up to and after his diagnosis. It’s no understatement to say this has changed how we view our entire lives - decisions about whether to have kids, where to live, how to plan financially for our future, etc.
Furthermore, while disease progression is variable from person-to-person, we have already been impacted more than we anticipated by Justin’s loss of strength, pain, and fatigue. We now have to think differently about simple things like who should pick out the watermelon at the store and how to get all our luggage into the overhead bin on a plane.
Thankfully, we’ve been blessed by a wonderful community in the FSH Society! Last fall, Amanda began volunteering her time as Director of the Colorado Chapter of the FSH Society, and 2019 will be our second Walk and Roll!
We are casting our nets wide and asking all our friends, family, and co-workers to support us and the thousands of others with FSHD. Here are three ways you can help:
1. Register to walk with Team Hill and plan to join us at our home for fun festivities afterward.
2. Donate to research efforts to cure FSHD right here one our page.
3. Learn about FSHD. Many people, and even doctors, aren't familiar with FSHD and it is massively under-diagnosed. Help us educate others and spread awareness.