2019 Gift of Giving
Nov
18
to Nov 19

2019 Gift of Giving

2019_Gift of Giving.png

2019 Gift Drive

Support our efforts to give blankets and toys to Shriners Hospital, the same hospital that cared for Mitch.

Blankets and toys can be sent to:

5526 West 13400 South #102
Herriman, UT 84096

Donate

Or, you can donate here:

View Event →

PTC Theraputics Gives Mitchell's Journey Grant for DMD Hope Kits
Sep
8
9:00 AM09:00

PTC Theraputics Gives Mitchell's Journey Grant for DMD Hope Kits

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/

 
 
View Event →
DMD Awareness Day
Sep
7
1:00 AM01:00

DMD Awareness Day

Mitchell’s Journey continues to support PPMD in its mission to advocate, educate, and advance research for the DMD community. On this special day, please consider donating to this remarkable organization who tried to save our son and continues to fight for children all across the world.

View Event →
Keynote @ PPMD Conference
Jun
27
to Jun 30

Keynote @ PPMD Conference

36495206_10214777436123360_7853678155519754240_o.jpg

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.

APPLY FOR PPMD’S ANNUAL CONFERENCE NEWLY DIAGNOSED PROGRAM

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/

Our Keynote at the 2018 Conference in Scottsdale, Arizona

View Event →
2018 PPMD Annual Connect Conference
Jun
28
to Jul 1

2018 PPMD Annual Connect Conference

2017Meetings_conf.png

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.

View Event →
Mitchell's Birthday
Apr
29
9:00 PM21:00

Mitchell's Birthday

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.

View Event →
PPMD Advocacy Conference / Board Meeting
Mar
3
9:00 AM09:00

PPMD Advocacy Conference / Board Meeting

2017Meetings_advocacy2.png

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...

  • A full and promising Duchenne drug development pipeline with over 40 companies developing drugs for Duchenne.
  • Over $500 million in funding for Duchenne related programs at the National Institutes of Health, Center for Disease Control, and Department of Defense.
  • A standard of care established for all those diagnosed with Duchenne, which has markedly improved the quality of life and extended lifespan.

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.

Basic Agenda

  • Sunday, March 4th 3pm-7:30pm - Advocate training (Mayflower Hotel)
  • Monday, March 5th, 10am-4pm - “The Duchenne Patient-Focused Compass”meeting (Mayflower Hotel)
  • Tuesday, March 6th, 9am-5pm - Hill meetings - both House and Senate (Capitol Hill)
View Event →
Resource Development
Jan
15
9:30 AM09:30

Resource Development

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.

View Event →