On January 15, 2020, we’re hosting a private event for DMD parents and young adults. We’ll have a few guest speakers and dinner along with a chance for families to network and build bridges. We’re thrilled to partner with PTC Therapeutics, who is sponsoring this event.
We are thrilled to have been award PTC Theraputics STRIVE Award for 2019. They have given Mitchell’s Journey a $30K grant to support our Hope Kit Program for the Duchenne community. While our hope kits are meant for everyone, this grant is earmarked specifically for the DMD community.
Here’s a write-up from their website:
A diagnosis of Duchenne Muscular Dystrophy (DMD or Duchenne) can have a devastating effect on families. Patients and caregivers both experience the emotional roller-coaster that comes with the inevitability of disease progression and facing the unknown. As a result, this can lead to feelings of anxiety, hopelessness and isolation. Mitchell’s Journey realized that there was a lack of tools to help guide family members in coping with grief and managing the emotional and social consequences of receiving a Duchenne diagnosis. Mitchell’s Journey is internationally recognized as a beacon of hope for those affected by Duchenne. Their mission is to inspire and empower families so that they are able to cope with the emotional and social challenges associated with Duchenne.
With this in mind, the organization began designing Hope Kits. A Hope Kit is a package that families with Duchenne, or friends of those families can request via the organization’s website. The kit consists of a number of useful tools such as uplifting stories and tips on managing emotions and relationships in times of crises.
Funding from the STRIVE Award will allow the organization to produce a number of hope-promoting resources for the families affected. These will include a 90-page guided journal on the journey of self-discovery and seeing the world with new eyes; a book on hope; a 12-part podcast series consisting of interviews with wellness experts and discussions with families who have demonstrated courage in the face of struggle; and narrated stories from the Mitchell’s Journey story library. Mitchell’s Journey hope to deliver at least 500 Hope Kits to Duchenne families.
To learn more about their STRIVE program, visit: https://www.ptcbio.com/about/strive-awards-program/
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 working on a Christmas message we plan on sharing the night before Christmas. We hope you enjoy it.
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.
Here is a video from a previous gift and blanket drive. Join us in 2018 as we lift little hands and hearts during times of trouble.
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.
This year, we'll be putting together gift packages for families who could use some help with presents for their families. These families are under intense financial pressure to support their child (or children) with DMD and many of their financial resources are swallowed up in medical expenses, mobility devices, insurance, and more.
We will also be delivering blankets and toys to Shriners Hospital, the same hospital that cared for Mitch.
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.
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