Tag: cure duchenne

LA Trip

Wow, Sarah and Hans were able to fly to LA for the live premeir of The Firsts: Stories That Changed Duchenne.

Thanks to Sarepta for sponsoring the premeir and to UCLA for all the research they do for duchenne and our warriors.

The premier was held at UCLA Nimoy Theater and the link to the documentary is here

UCLA also has a whole department dedicated to research for Duchenne Muscular Dystrophy and if you would like to learn more visit http://cdmd.ucla.edu

From Sarah and Hans: it was a great weekend with everyone from the community that was able to attend. We are always grateful to be invited and to be able to attend Duchenne Awareness events.

Breaking News

Today 10/15/26, Sarah and Bennett were on the Fox 59/CBS4 NEWS sharing Bennett’s journey with Duchenne Muscular Dystrophy.

What a crazy time, we were asked to share Bennett’s story on the morning news and of course we said Yes!

You can watch the interview here

Part One

Part Two

Bennett thoroughly enjoyed himself while on set and we got to share info for the Cure Duchenne Workshop taking place this weekend in Indy, 10/17/26.

Screenshot

And some late breaking news… our charity walk for Best Day Ever that we held back in September was also a success. We raised just over $600 for Best Day Ever Foundation and fun was had by all in attendance!

Sorry we’ve been absent, life happens, but we are still here and sharing Bennett’s journey with all that are interested and willing to listen!

Til Next Time … the Rasmussens

P.S. Sarah and Hans will be heading to LA later this month to watch the documentary that Sarah was a part of, back in May of this year. Stayed tuned!

Futures Conference 2026

We had such an incredible weekend at the CureDuchenne FUTURES Conference. It was our first time attending, and there is truly something special about being in a space filled with people who just get it — no explanations needed.

Watching the boys interact and make friends was so emotional in the best way. Seeing Bennett meet other boys who move like him, think like him, and understand his world brought a tear to my eye more than once. There’s something so powerful about that kind of connection.

And beyond the friendships, there was so much hope in all the learning — hearing from therapeutic companies about what’s up and coming, the progress being made, and the future of care for our boys. What a gift it was to be part of those conversations.

We can’t thank @team_joseph enough for helping get us here, and @cureduchenne enough for creating such a meaningful weekend for us families.

We’re already looking forward to seeing everyone in San Diego next year. What an honor this weekend was. ❤️