Filtering by: Mitchell's Journey Foundation

2018 PPMD Annual Connect Conference
Jun
28
to Jul 1

2018 PPMD Annual Connect Conference

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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.

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

PPMD Advocacy Conference / Board Meeting

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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)
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2017 Gift Drive
Dec
2
6:30 PM18:30

2017 Gift Drive

2017 Gift Drive

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.

Blankets and toys can be sent to:

5526 West 13400 South #102
Herriman, UT 84096

 

Or, you can donate here:

Donate
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ALEX & ANI HELPING MITCHELL'S JOURNEY
Oct
13
6:00 PM18:00

ALEX & ANI HELPING MITCHELL'S JOURNEY

We are grateful for Alex & Ani, a national jewelry boutique whose Salt Lake City store is hosting an event that will benefit the Mitchell's Journey Foundation.  

Drop by their store on 51 S. Main Street on October 13, between 6-9 PM.  15% of purchases will be donated to our foundation to help us continue our good work.

Learn more about Alex & Ani on their website:  https://www.alexandani.com/salt-lake-city

 

 
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Mitchell's Journey continues to be recognized as a beacon of hope, insight, and courage for people and families all across the world. 

From its universal messages of faith, hope, and courage, to its advocacy and awareness work, along with serving local families with DMD, the Mitchells Journey Foundation has global reach and a deep local impact.

Mitchell's Journey Foundation is a registered non-profit.

If you're not local and still want to help Mitchell's Journey Foundation, you can donate directly through our website.

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Lights Festival
Sep
16
7:30 PM19:30

Lights Festival

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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/

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Utah Medicaid Drug Utilization Review Meeting
Sep
14
9:30 AM09:30

Utah Medicaid Drug Utilization Review Meeting

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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).


 
 

 
 

 

 

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DMD Family BBQ
Jul
29
4:00 PM16:00

DMD Family BBQ

If you're a local DMD family, join us for a BBQ at a special DMD family's back yard.  We'll post details shortly, but save the date and come get to know other DMD families in the SLC community.

Let us know if you plan on coming!

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Art Project
May
19
9:30 PM21:30

Art Project

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.

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