Navigating this new 2023 school year is a challenge for anyone. But with a condition like Duchenne muscular dystrophy to contend with, it can become even more difficult. To find success while transitioning to a new school year with Duchenne, it’s important to communicate with teachers, administrators, and staff your needs.
Many people with Duchenne or physical disabilities play video games because it’s a way to stay competitive in a less physical environment and connect with friends who may live far […]
CureDuchenne Cares had its inaugural visit to San Juan, Puerto Rico, on June 10 for a workshop on current standards of care for Duchenne, research and clinical trials, family support, […]
The last day of FUTURES 2023 was jam-packed with sessions focused on how people with Duchenne can use their lived experience to help others going through the same challenges. A Game of Life encouraged people to share tips and tricks that work for them, breakout sessions met people wherever they were at in their Duchenne journey, and the closing session was an opportunity for everyone to share what was on their mind.
Today was all about ensuring that boys and adults with Duchenne receive the best care possible. It was also a time for celebration. At the end of the day, CureDuchenne hosted a summer camp-themed party for individuals with Duchenne, parents, caregivers, and anyone tied to the cause.
The first full day of FUTURES has wrapped! In the last couple of hours, we’ve had educational workshops on gene therapy, RNA-based therapeutics, and muscle restoration and anti-inflammatory treatments. Plus, everyone’s had a chance to meet a new person and create relationships that will last a lifetime. It’s been a lot to digest, so here’s the top highlights from Friday at CureDuchenne FUTURES.
There’s plenty of times in life where plans fall apart. That’s especially the case if you have Duchenne muscular dystrophy like me. A building you were expecting to enter might […]
CureDuchenne is made up of people from all walks of life who share a common purpose — to find a cure for Duchenne and support all the families and patients […]
Fourteen years ago, I travelled to Russia with my family, just months after our son Hawken had been diagnosed with Duchenne muscular dystrophy. It was very raw for us at […]
