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’re honored by the opportunity to share Mitchell’s Journey with the staff at Thermo Fisher Scientific. They specialize in a manufacturing process related to DMD and want to be reminded of the “why” behind what they’re doing. Organizations like these always inspire us because of their interested in the human impact of what they do.
Chris will be giving they keynote at the Inherited Neuromuscular Disorders Family Conference.
Registration: upin.genetics.utah.edu/
Inherited Neuromuscular Disorders Family Conference
November 2, 2019 10:00 am - 3:30 pm
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/
The largest, most comprehensive annual, international conference focused entirely on Duchenne.
Each year nearly 500 families from around the world gather at our Annual 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.
Registration for PPMD’s 2019 Annual Conference will open in March.
PPMD will again be offering a support program for newly diagnosed Duchenne families to attend the Annual Conference. If your child has been diagnosed with Duchenne after January 2017 and you have never attended a PPMD Annual Conference and would like to attend the conference to gain a better understanding of Duchenne care and research, and to meet other families living with this diagnosis, please apply for this scholarship to waive your conference registration fees.* Our 2019 Annual Conference Newly Diagnosed Program application will open in February. For questions, contact nicole@parentprojectmd.org.
*PPMD can offer conference scholarships to approximately 30 families on a first come, first serve basis. This scholarship covers conference fees only and does not cover travel or hotel accommodations. Kids Track and End Duchenne .1K are not included in this sponsorship.
https://www.parentprojectmd.org/get-involved/attend-events/annual-conference/
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’re working on a Mitchell’s Journey video for Thanksgiving on finding gratitude. We’ll post it soon.
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]”
Mitchell's Journey will be speaking at a conference in Dublin Ireland sometime in the month of October. We'll share details as conference details solidify.
On September 19th, we'll be sharing our story with the Love Your Story Podcast - a site dedicated to sharing the stories of others.
https://loveyourstorypodcast.com/
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.
Sweet Mitchell would have turned 16 this year. On April 29th, our family will be celbrating his life and the beautiful lessons he taught us through his quiet example.
As Mitchell's birthday approaches, we'll be asking people all across the world to set some time aside to make moments matter with the ones closest to them. We'll also offer challenges to serve strangers with acts of love and kindness.
![[Tentative] Miles for Mitchell's Run](https://images.squarespace-cdn.com/content/v1/57b93284e4fcb5fdb2aa62c0/1543291689331-FWFJ86NRTVDAXWL4NJ73/miles-for-mitchell_logo-vertical.png){kind=logo}
