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.

IMG_0344.JPG
 

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.

J34A8906.JPG
30724614_1214085638725944_8666143482382909440_n.jpg

 
30709283_1104703246336497_4466984451351511040_n.jpg
 

The Hope Marco Inspires in Others Is Remarkable

30740668_10216472432420387_6001316884547371008_o.jpg
30738659_2065546677054314_7008077271932076032_o.jpg
 
 
WFC85-4x6Flyer.jpg
 

2017 Movie Night / End of Year Presentation

25394806_1947283551954324_49826068516952035_o.jpg

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.

 

Speaking Tomorrow Night

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.

Slide14.PNG
Slide27.PNG
Slide24.PNG
Slide182.PNG
Slide183.PNG
Slide185.PNG
Slide163.PNG
Slide176.PNG
Slide191.PNG

Speaking In Nebraska December 10, 2017

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.

VISITING THE NUNNELEE CLINIC

IMG_9013.JPG

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

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

Parent Project Muscular Dystrophy - New Brand

21271093_10155125576164983_1204081421571802388_n.png
 
21369465_10154624399265356_1983741581313540034_n.jpg

PPMD has a refreshed look just in time for Duchenne Action Month! 

Our new logo and tagline shouldn’t feel entirely different to the PPMD you have known for over 23 years rather we hope it feels more urgent. We believe this new look empowers each of us as a member of this community to take action, to join the fight.

That’s why we wanted to unveil our new look this month. Never has there been so much promise in Duchenne research and care, and never has our voice resonated more strongly in Washington. But with all this momentum, it is more important than ever before for each of us to do what we can to end Duchenne. (It's also a hint of some more exciting changes coming from PPMD over the next several months!)

At PPMD, we’re fond of the saying, “No one can do everything. But everyone can do something."

This September let's all do something…
To help raise awareness.
To join the fight.
To #EndDuchenne.

EndDuchenne.org/ActionMonth

Seasonal Content Released

The Seasons Project is an experimental content series designed to focus on themes, tools, and resources to make the most of life.  Each month we'll publish a series of new essays, inspirational media, tutorials and other content that we hope will bless your life.  

Each month will have a theme, most often centered around the season. We will try this until the end of the year and based on feedback and use of content, we may continue this concept into 2018.

 
 

Visiting MDA Summer Camp

 
 

Mitchell's Journey donated $5,000 to MDA of Utah to support summer camp activities in 2017.  Today, we visited the camp to see how the kids were doing.


Mitchell's Sister & Cousin Serving as MDA Summer Camp Counselors