
Building A Ramp for a DMD Family
We’re evaluating applications to build a wheelchair ramp for a local DMD family.
Details will be shared spring of 2019.
Here’s a video of a ramp we built for a local DMD family.
We’re evaluating applications to build a wheelchair ramp for a local DMD family.
Details will be shared spring of 2019.
Here’s a video of a ramp we built for a local DMD family.
On December 6th, we’ll publish some ideas to make your holiday extra special. We hope some of these ideas bless your lives as much as they’ve blessed ours.
We’ll be doing a screen share with a group in Guatemala on how to best support a DMD child in their educational system. We’re sharing our presentation “A Caretakers Guide [for DMD]”
We're excited to film Marco Simmons at his next fight. We're about to start compiling his fight and interview footage for the first version of our documentary about a man who fights to raise awareness of DMD and inspires thousands of little boys and their families to fight on.
Chris will be giving a Keynote at the annual PPMD conference Saturday, June 30, 2018. More details to come.
The largest, most comprehensive annual, international conference focused entirely on Duchenne.
Each year nearly 500 families from around the world gather at our Connect Conference to learn the latest progress in the fight to end Duchenne. They also gather for support, strength, and camaraderie.
This is your opportunity to gain direct access to the people fighting everyday for children like yours and perhaps, most importantly, it is your opportunity to meet and reunite with families on a similar journey as you. There is incredible power and strength in connecting.
It continues to be an honor to serve on the PPMD Board as I watch how responsibly they run their foundation and lead the charge toward medical advancement, and improve care for patients and families who cope with DMD.
Marco's next fight is scheduled for April 14, 2018 in Laughlin, Nevada. Our crew will be there to document behind-the-scenes footage of Marco's remarkable life as a fighter and advocate for DMD children all across the world.
Here's Trailer of the documentary in development:
Come and advocate for Duchenne directly with Members of Congress. Our annual Advocacy Conference continues to yield results for the Duchenne community.
Over the last 16 years Duchenne Advocacy has resulted in...
We hope you can join us in DC. This year includes a meeting on Monday called the "Duchenne Patient-Focused Compass" meeting, with invited members of the FDA, and other federal agencies to hear directly from Duchenne patients and caregivers.
January and February are typically our most quiet months as Mitchell's Journey spends a great deal of time developing new family resources that are published throughout the rest of the year. Stay tuned to learn what we'll release this year.
Jordan Commons, Sandy Utah | Saturday, December 16, 2015 @ 3:00 PM | Special Mitchell's Journey Presentation at 3:05 PM
In the month of December, we'll be releasing content focused on the theme of giving the greater gifts. Be sure to check out December and previous months. Between now and the end of the year, we'll be posting more exclusive content.
In the month of November, we'll be releasing content focused on the theme of finding gratitude. Be sure to check out November and previous months. Between now and the end of the year, we'll be posting more exclusive content.
Mitchell's Journey Foundation is a registered non-profit.
In the month of October, we'll be releasing content focused on the theme of family traditions. Be sure to check out October and previous months. Between now and the end of the year, we'll be posting more exclusive content.
Dear Mitchell's Journey Friends
Over the years, many readers have asked how they can help support Mitchell's Journey continue 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.
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
September 16, 2017
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https://thelightsfest.com/event/utah/
806 N Pony Express Parkway
Eagle Mountain, UT 84043
https://thelightsfest.com/
We will be attending the Utah Medicaid meeting.
They are reviewing Exondys and Emflaza, in addition to developing criteria for FDA approved drugs approved through the AA pathway, which could potentially put future DMD drugs in jeopardy. We have seen positive decisions where we've actually sent DMD patients/caregivers to these meetings so they can better understand DMD.
We'll be addressing three agenda items that impact the DMD community are 4 and 5. Obviously, we don't want Utah to develop criteria that prevent access to Exondys and Emflaza. And, #5 is particularly important if they develop a policy that prevents access to FDA approved drugs that are approved through the accelerated approval program; not only will a negative policy impact current and future drugs for Duchenne, but will also impact other rare disease communities as they see drugs get approved by the FDA AA pathway (for example: rare, fatal cancers).
In the month of September, we'll be releasing content focused on the theme of growth and change. Be sure to check out September and previous months. Between now and the end of the year, we'll be posting more exclusive content.
Mitchell's Journey Foundation will be awarding a $5,000 donation to MDA of Utah to support their summer camp activities for children with Muscular Dystrophy.
As part of our ongoing effort to serve families across the globe, Mitchell's Journey is sponsoring various art projects that offer hope to families who struggle with loss and are trying to make sense of suffering.
We'll share more about these upcoming projects in the coming months - but know they are special and have deep implications for those who will benefit from this art.
See a recent example where we used art to lift the heart of a terminally ill child.