“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.

On Sunday, October 29, 2023, our team joined the Tckachenko family and community of Scottsdale, Arizona for the inaugural community fundraiser organized by Heal DMD - a nonprofit organization committed to promoting healing and well-being for individuals with Duchenne Muscular Dystrophy (DMD) and their families....

Jessica Curran is a DMD mother to her son Conner, CRD board member as well as a DMD patient advocate.

May is Ehlers Danlos Syndrome (EDS) Awareness Month, so today I’m sharing my experience with the condition. I have hypermobility type EDS (hEDS), but there are 12 other types of EDS...