Keynote @ PPMD Healthcare Summit

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Tonight I spoke at PPMD's healthcare summit and shared a candid look at the impact social media has on families, medicine, and the pediatric population. I also explored some challenges related to cognitive bias, the Dunning Kruger Effect, and the need to be more circumspect with words -- especially at a time when humans are not only flooded with information but sometimes drowning misinformation.

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MITCHELL'S JOURNEY / GUATEMALA

This afternoon I spent some time with educators, faculty, and staff in Guatemala who want to serve better one of their students who has DMD.

I was humbled and touched by their sincerity and how much they want to help. An old high school friend, Ginger Carlson, who runs their curriculum program asked that Mitchell's Journey share our son's story and experience through the education system. Specifically, they wanted to know what helped our boy and what educators can do to better serve a student whose muscles are wasting away.

Lately, much of Mitchell's Journey's work has been helping families and educating support groups across the world. 
Some we've posted on our website, other's we haven't. While our cultural nuances and languages may be different, one thing I've come to know is we're one big family. Every human is more similar that they're different.

Mitchell's Journey has been busy behind the scenes building tools to help families cope with life's greatest difficulties - regardless if they have a disease, a life-setback, or dealing with loss.

Soon those tools will be available to the public. We'll also start sharing new stories soon.

AN EVENING WITH ARCHIE & THE BOYS

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Tonight Natalie and I spent time with Paula, Padriac, Archie, George, and Isaac. These three boys have DMD, just like Mitch. This family was so gracious to have us over for dinner, and we enjoyed their company a great deal.

Watching the two younger boys wrestle around the floor and walk on their tippy toes reminded us of our sweet Mitch. Archie, the eldest brother, was smart and insightful. We loved talking to him.

The younger boys asked if Natalie could read a bedtime story, which she did. I think this was the highlight of the trip for my sweet wife. It reminded her of reading stories to sweet Mitch, and it warmed her heart. The boys sat attentively in their bed as Natalie read a children's book we wrote about Mitch called "The Thing About Giving." It's a story of Mitchell getting his puppy and what happens when we give: both the giver and the receiver are blessed.

We have one more day here, and honestly, we don't want to go quite yet. So many other families we want to love. So many stories we want to hear. So many heavy hearts we want to lift and hug.

Article Translated In Spanish

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!

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Article on 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.”

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2018 PPMD Keynote

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)
https://www.parentprojectmd.org/…/annual-confe…/live-stream/

Livestream with Youth Camp

 
 

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!

Meet Dr. Butterfield MD, PhD

 

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.

Russell Butterfield, MD, PhD received his PhD in mammalian genetics, and medical degree from the University of Illinois. He completed his residency training in pediatric neurology at the University of Utah in June 2009. He is currently an Assistant Professor in the Departments of Neurology and Pediatrics, after completing a fellowship in neuromuscular disorders sponsored by the Muscular Dystrophy Association. Dr. Butterfield is board certified in Neurology with special qualification in child neurology.

Dr. Butterfield’s clinical interests include all types of neurogenetic and neuromuscular disorders with an emphasis on muscular dystrophies of childhood onset. His research interests are in understanding genetic aspects of these disorders. His current efforts are in characterization of genotype/phenotype relationships and molecular pathogenesis in collagen VI myopathies such as Bethlem myopathy and Ullrich congenital muscular dystrophy.

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2018 Charity Run (Date TBD)

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.

If you're interested in volunteering with our 2018 run, please let us know on our websites: mitchellsjourney.org or milesformitchell.org

With gratitude,

Chris & Natalie Jones

Marco Won! He's 3-0

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.

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The Hope Marco Inspires in Others Is Remarkable

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2017 Movie Night / End of Year Presentation

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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.

 

Utah Department of Health's Drug Utilization Review Board

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.

#mitchellsjourney #mitchellsjourneyinaction @ Utah Department of Health

The Lights Fest & Mitchell's Journey

Dear Mitchell's Journey Friends

Over the years, many readers have asked how they can help Mitchell's Journey as it continues its mission and messages of hope. Here is one such opportunity, especially for those who live in Utah. On September 16th, 2017, The Lights Fest will take place in Salt Lake City. Thousands of people will join together to enjoy live music, experience the best food trucks of Utah and light up the sky with sky lanterns as they take flight into the evening sky. You can light your own lanterns in memory of someone you lost or in hope of someone still living. I have a feeling this will be a spirit-felt event.

WHERE TO REGISTER
https://thelightsfest.com/event/utah/

USE PROMO CODE: JOURNEY
You'll save $5 & $3 dollars will be donated to the Mitchell's Journey Foundation.

Personally, I've always wanted to do something like this and I'm thrilled to have an opportunity. I know Mitch would have loved to see such a sight, too. The Lights Fest will donate $3 of your registration fee to the Mitchell's Journey Foundation, a registered non-profit. With your support, we can continue to serve people all across the world.

If you register and plan on attending, we would love to meet you at the event. We'll share details on how to find us as we get closer to that date.

If you live far away and it's not practical to attend and you still want to help, you can also donate directly to our foundation here: http://mitchellsjourney.org/

With gratitude,

Chris & Natalie