At the end of May we were invited to share Bennett’s story at the Professional Firefighters Convention, Indiana. This is an annual get together for the association and we were privileged to be asked to share our story.
As you can see Bennett was absolutely enjoying himself!
A few of the things we were able to share… Bennett’s daily regiment of supplements, treatments and number of infusions (138), as well as all the exciting information we were privy to from our trip to Orlando (Cure Duchenne Conference).
What a month we had! Bennett and his siblings are now concentrating on enjoying Summer Break ( while still receiving his infusions and going to physical therapy, weekly).
You can always hop on over to Instagram . . . therasmussens.vs.duchenne to follow Bennett’s story and see what he is up to!
This week Bennett had his six month check-up at Nationwide Hospital in Columbus, OH.
The doctor was very pleased with the way Bennett’s treatment is going! The doctor commented that Bennett could/should be the poster boy for more than one of his treatments (making mom and dad’s hearts happy!)
Bennett not only receives exxon skipping medication once weekly he also takes steroids alongside another anti-inflammatory medicine. Along with those pescribed medication Bennett takes a regiment of supplements including but not limited to tumeric and CBD oil daily.
If you would like to know Bennett’s full range of medications and supplements Sarah has a post over on their Instagram account. . . . Therasmussens.vs.duchenne
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. ❤️
Field day may seem small to some people, but for families living with Duchenne, moments like this are the best.
Watching him run and laugh, with his classmates, and simply feel like one of the kids without hesitation was such a fun thing to witness. These kids and his teacher make him feel so included and capable. That kind of support changes everything for kids like Bennett.
For a little boy who once doubted himself, seeing him confident and proud of what his body CAN do was a real gift.
Field day wasn’t about winning races. It was about joy, confidence, inclusion, and getting to just be a kid for a while.
Sarah just got back from a caregiver advisory board meeting with the makers of Bennett’s infusion medication. We were celebrating the 10 year anniversary of the specific infusion drug that Bennett’s received weekly.
She was even interviewed to share their journey for a documentary.
And, Sarah learned a lot, there is currently a trial on a higher dose of the weekly infusion with data to hopefully be out later this year. They believe that the higher dose will prove to slow the progression of the disease at a higher rate.
She was also able to learn about the FDA approved gene therapy, see 3 year data from the therapy, and connect with families that have already received it.
All in all, it was a great two days with lots of information and connecting with families and others in the RARE community.
We will be discussing the possibility of gene therapy in combination with exon skipping for Bennett once we get back from the FUTURES conference in Orlando later this month. Thats right, Bennett will be attending his first Cure Duchenne conference in just a couple of weeks.
Stay tuned for more news and info about whats to come and what is on the forefront for DMD warriors like Bennett!
Bennett’s mom Sarah Rasmussen will be participating in the Indianapolis Mini Marathon this Saturday, May 2 2026. Sarah has decided to do something difficult and take on the mini marathon in honor of Bennett, who does something difficult everyday. He battles against this rare disease with courage, joy and resilience!! So come out and support Sarah and her plight to raise awareness. You can help in the fight to find a cure for Duchenne Muscular Dystrophy by donating to MDA. Sarah is taking donations: 13 dollars for 13 miles, click here and help her reach her goal of $1300.
Hi, we are the Rasmussens (Hans, Sarah, Bennett Dean, Hazel Mae and Lewis James). Our son, Bennett, was diagnosed with Duchenne Muscular Dystrophy, a rare muscle-wasting disorder for which there is no known cure. It doesn’t make sense and it certainly isn’t fair that he has to face this in his lifetime.
Bennett is such a wonderful child. Diagnosed at 3 (almost 4) years old, you will always find him smiling. He loves to make people laugh and he gives the best hugs. Bennett loves to climb rocks, go to the zoo, play outside, read books, eat all the fruit, and he enjoys anything Disney-related. Most importantly, he loves his family and spending time with them more than anything else in the world. We don’t know why this chose Bennett, but unfortunately it did.
We are not sure how navigating this journey is going to look, but we do know it is going to bring a lot of medical bills, physical therapy, and other expenses as the years go on. We want to give Bennett his best chance at a full and happy life. We are praying and believing that Bennett will defy the odds, hoping for advancements in medicine as the years go on, and choosing to continue our adventurous lifestyle with a few pit stops at Children’s Hospitals along the way.
Fast forward to 2026, Bennett is now 6 and a half and doing well. Bennett has weekly Exxon skipping infusions, takes steroids daily and many natural supplements. He also participates in occupational and physical therapies. He loves his brother, sister and of course mom and dad. As well as his extended family and his stuffies. This website will serve as our families journey in the battle against this rare disease. You will find information not only on our journey but also links to important events (our annual Brave Like Bennet Walk) and dmd gear!
So stay tuned, there is more to come! DMD with Benny D
