Today I visited the University of Utah Clinical Neurosciences Center.
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Meet Dr. Butterfield MD, PhD. He is focused on helping children like Mitch, who have DMD and other neuromuscular diseases. I was immediately impressed with his depth, intelligence, and empathy. We covered a lot of ground. We discussed the complexities of science, emerging medicine, clinical operations, and the deeply human dynamics that affect patients and their caregivers. (and all along I thought being an entrepreneur was complex...)
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While I’m interested in the science that will save children, I’m equally interested developing tools that can equip families and individuals to better cope with the inevitable holocaust of life’s hardships, whether from DMD or other life traumas. I not only want to prolong and improve the quality of life, I want to help people make the most of the life they have.
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I’m excited to get to know this doctor and his clinic better over the coming months and years. I’m also excited to serve on the board of #PPMD and help where I can. I have deep admiration for Pat Furlong and her staff.
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As I sort out my place in the universe, and what life looks like in a world without my son, I’m discovering ways #mitchellsjourney might contribute to the larger narratives of science, humanity and family relationships that are unique and deeply human.
Our annual charity run on Saturday (April 22nd) was a great success. Thank you to all that contributed, volunteered and participated, all around the world. The funds raised at that event will help us help families. In the coming days and weeks, I'll not only tell you what we're doing with the money we raised, I'll show you who it's going to and how exactly it's helping others. We keep our promises - when you run with us, you will change lives.
We will share more about the run totals in the coming days as we still have some virtual runners out there. For those who still want to run virtually, we are leaving registration online open until the end of the month. If you register, we will send T-shirts and run medals to you.
There was a sweet spirit at the event that reminded me of little Mitch. Later that afternoon, long after the event, I found myself more emotional than usual. Yes, I felt a measure of grief, but I also felt even more peace ... more than anything, I felt an overwhelming sense of empathy for the families who carry the burden of DMD.
#mitchellsjourney is not just the story of a little boy who died, it's the ongoing story of hope and faith and learning how to live while we still have time.
Little Mitch taught me that when we give, we live.
On Monday, we received a package in the mail with this year’s Miles for Mitchell run medals. I was so excited I asked Natalie if I could take a photo of her with the new medal.
Inscribed on each is a silhouette of Mitchell being pushed on his wheelchair by his older brother, Ethan. We extracted this silhouette from a photo I took of them the fall before Mitch passed. It’s symbolic on several levels – but for the run, it describes what happens when people participate in our charity run. They become the person behind the wheelchair. On the bottom are the words, “Run with us, Change lives.”
Our local run is April 22nd and we have people from many states coming to Salt Lake City to run with us in person. However, this is a global run – so people can register as individuals or teams anywhere in the world. Last year we had runners from Africa, Cypress, Singapore, Australia, Germany, the UK and many other countries. It was so neat to see people send us photos of them wearing the Miles for Mitchell T-Shirt in support of our cause.
Mitchell’s journey has an important work to do. We hope you will join us this year so we can make an even bigger impact in the lives of people all across the world. At this year’s run, we’ll be highlighting a young boy, Kaden, who has DMD. We are going to help them raise money for a wheelchair ramp and help with mobility needs.
You can register for our run or donate at milesformitchell.org
You can learn about our charity work at mitchellsjourney.org
Today we filmed the first part of a documentary on Marco Simmons, an undefeated MMA fighter who competes in memory of Mitch and in hope for many children across the world who suffer from DMD, a catastrophic muscle wasting disease.
We were so inspired by Marco, his remarkable family and the people he surrounds himself with. This is going to be an inspirational story we can't wait to share.
Register with our new website, mitchellsjourney.org to get updates and special access to some behind the scenes footage.