Hear community perspectives on topics ranging from navigating a diagnosis to reflecting on clinical trial experiences.
Elijah Stacy is the founder of the 501(c)(3) nonprofit Destroy Duchenne, which he started at the age of fifteen. He is determined to advance gene editing and gene therapy to save his life, his brother’s life, and the lives of thousands of people around the globe who have been diagnosed with Duchenne.
We previously lived in Central California and raised organically fed pork on pasture. When Kal was diagnosed with Duchenne...
My husband Keven and I have 3 kids and we’ve been homeschooling for more than 10 years. Here’s a little background of how we got here.
“So, how are they doing?” That is the most frequent question we get asked about our 2 boys (ages 7 and 10) who have been diagnosed with the fatal muscle wasting disease, Duchenne muscular dystrophy. There is no easy or short answer to this question because they are both currently doing well, but yet they aren’t because their bodies are slowly deteriorating. Thankfully Duchenne life hasn’t hit them very hard yet and most of their days are just like other kids, with a few exceptions.