By Debra Miller, Founder and CEO of CureDuchenne Duchenne International Outreach: Bridging Gaps in Duchenne Care At CureDuchenne, we have always believed in the transformative power of connection—the kind of […]
Mother of two boys with Duchenne shares how she’s successfully advocated for her children with a rare disease as a mama bear.
A Race Against Time: The CureDuchenne Clinic’s Remarkable Efforts Bring Life-Changing Gene Therapy to Young Boy on the Brink of Ineligibility.
There is no way to be a normal parent, when you have abnormal circumstances. The important thing is that you keep getting up every day loving those kids. You may think it’s not enough, but your children see you differently than you see yourself. I have days that I feel like super mom and days that I feel like a huge failure. “It’s just too hard,” I mumble to myself as I crawl into bed at night unsure of how I will possibly do the whole thing again tomorrow.
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 […]
Happy Father’s Day to all of the dads out there who have either found a way – or made one – so that their kids can experience their best life.
– Paul Miller, aka Hawken’s dad
The CureDuchenne Time Capsule Video is a beautiful compilation of interviews conducted at the 2019 FUTURES Conference in Anaheim, CA. We asked families to share their stories with us, as […]
Braedan’s Bridge began the journey in 2011 shortly after our own son, Braedan was diagnosed with Duchenne muscular dystrophy. As most parents, our story is very similar. One day you […]
August 8, 2011 was the day we first heard the word Duchenne. Every moment of that day is etched in my memory. We were hit out of the blue with […]
