A non-profit in Texas, The Akari Foundation, translated a recent article written about Mitchell's Journey. Thank you for making this available to the spanish speaking community!
This is where we post more day-to-day activities with Mitchell's Journey.
Here's an article written about the work we've been doing at Mitchell's Journey.
Five years after the death of a Utah boy named Mitchell Jones, the national foundation created in his name helps families struggling with the ravages of Duchenne muscular dystrophy.
Mitchell, who was diagnosed with Duchenne at the age of 3, died of heart failure on March 2, 2013, just short of his 11th birthday. One year later, the boy’s father, Christopher Jones, established Mitchell’s Journey — a 501(c)(3) nonprofit organization that “provides tools and insights on grief, healing, and learning to live a life of significance.”
Christopher Jones, founder of the nonprofit Duchenne group “Mitchell’s Journey.” (Photo by Larry Luxner)
Jones, 44, is a self-described “serial entrepreneur” from Salt Lake City whose creative ad agency helps other nonprofits. His wife, Natalie, is a stay-at-home mom.
A board member of Parent Project Muscular Dystrophy (PPMD), Jones recently spoke to Muscular Dystrophy News Today following his keynote presentation at PPMD’s 2018 Annual Conference in Scottsdale, Arizona.
“I definitely want to create awareness,” he said. “There’s a million diseases out there, so nobody cares. But if you talk about a human story, they learn about Duchenne. My strategy is to give them something they can walk away with that’s going to help them.”
Here is the keynote shared at the 2018 Annual PPMD Conference. It was a blessing to share some ideas on how to find joy in a journey otherwise punctuated by difficulty and discouragement.
About to give a keynote at the #PPMD conference on the pursuit of happiness: surprising discoveries about finding joy in the journey.
Though I am speaking to the DMD community, this is a message for every person on planet earth. #mitchellsjourney
It's being live-streamed at 10 AM Mountain Time (~25 minutes from now)
Pat Furlong is a tremendous leader in the fight against DMD and trying to help newly diagnosed families.
Greg Tanner, the founder and director of Base Camp, a summer program for youth that teaches leadership and provides humanitarian service, introduced his audience to Mitchell's Journey as a foundation to support this summer. Their goal is to directly serve families affected by DMD. We're excited to work shoulder-to-shoulder with them!
Today I met with Dr. Butterfield MD, PhD who runs the clinic at the University of Utah Neurosciences Center.
He had heard of Mitchell's Journey and our son's story and wanted to connect. It was a great meeting. He's also been looking at certifying with PPMD's Care Center Program.
I was immediately impressed with him. He seems to posses a rare blend of intelligence and empathy empathy for patients who cope with DMD and other neuromuscular diseases.
Mitchell's Journey looks forward to finding ways to support the clinic at the U of U.
Hello friends of Mitchell's Journey & Miles for Mitchell.
Due to the availability of some key volunteers, we've postponed our charity run to later this year. We don't have a date set, yet, but anticipate something late summer or early fall. Stay tuned and we'll publish updates when the run firms up.
Chris & Natalie Jones
We're so proud of Marco Simmons for winning another match! He continues to bring hope and courage to many young boys with DMD. Here are a few captures from the documentary we're developing. This fight made another installment toward the completion of that piece.
Join us in congraulating and supporting Marco's ongoing efforts to raise awareness of DMD in honor of little Mitch and in hope for the many boys and families who are anxious for a cure.
The Hope Marco Inspires in Others Is Remarkable
A bit thanks to the Nathan & Bobbie Nielson donating their handicap van to Mitchell's Journey. We'll be making reparis to this car and donating it to another DMD family who needs a new car.
We had a full house at our end-of-year movie night. We had 14 DMD boys and their families along with Mitchell's Journey donors and supporters.
We shared this video just before the movie started which summarized what we accomplished in 2017.
I was honored to spend the evening with the TCF Omaha Chapter and to share Mitchell's story and how to find hope in times of trouble.
We look forward to spending time with the good people of Nebraska tomorrow night as we share a journey through grief and share our thoughts on the path to healing and discovering light in dark places. For those who attend, we'll be sharing our first-ever 26-page Tender Mercies Workbook, a tool designed to help people trace their blessings and understand how connected the events in our lives truly are.
In the month of December we'll be releasing holiday content - and some of our most important content yet. Stay tuned.
For those in the Greater Omaha area, I've been asked to speak on December 10th, 2017 in Elkhorn Nebraska. The title of my presentation is "A Thousand Points of Light" ... where I'll share special experiences on our journey with loss, and some unique discoveries and tools that offer hope and healing for those who grieve or are otherwise searching for hope. Unlike many of our speaking invitations which tend to be private events, this one is open to the public, however, you'll need to register by November 30th.
It is always an honor to spend time with the PPMD board. Pat Furlong is a remarkable driver and is relentlessly pushing for more answers to the biological questions surrounding DMD and more traction on ways to serve families affected.
I have been in Wilmington North Carolina this week on business and during a break I called a hospital/medical clinic to whom I gave a keynote on Mitchell's Journey and what happens to families on the other side of their practice of medicine. The next day, I gave another presentation to their local community on ways to make moments matter with their loved ones. I had grown to love and admire these good people in this community for the good they are doing to serve little children who are sick. I wanted to see how their clinic was doing and asked if I could drop by to say hello. They were so kind to give me a tour of their new facility. They had worked hard to raise money to build a beautiful facility - and it was remarkable in every way. What struck me the most was how excited they were ... not about a fancy place, but instead how the little things they did to ease the worried hearts of little kids.
I admire the practice of medicine, but I admire most compassionate medicine. As we were nearing the end of the tour, we walked by Neesha's office and I saw a framed picture of little Mitch. My heart swelled with gratitude. Although life is hard at times, it is still good.#mitchellsjourney
We have redesigned the essay template to simplify some elements and allow for more atmosphere to support the story being shared. All essays moving forward will use this new base template with atmospheric visuals as appropriate. Below are examples of how essays may appear in the future.
This morning Natalie and I spoke to the Utah Department of Health's drug utilization review board about the availability of two vital drugs for the #DMD community: Exondys and Empflaza. We briefly shared our story, pointed to mounting data that supports the continued use of those drugs, and asked them to make the recommendation to provide access to DMD families.
We didn't approach them as doctors or scientists. We didn't come in that room angry or combative -- in matters of lasting persuasion, that almost never works anyway. Instead, we came to them as a broken-hearted mother and father who lost a child and wanted to help other families have a shot at better outcomes. We wanted them to know those drugs are important and to take note of mounting data that shows they have a measurable impact.
Many of the board members approached us afterward and thanked us for lending a voice and a face to the discussion - they said our approach was refreshing, persuasive and powerful.
I was impressed by their posture and had the distinct impression board members understood their stewardship and responsibility to represent and care for patients.
The motion to recommend those drugs be available to Utah patients was approved.