MED13L Foundation

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MED13L Foundation The MED13L Foundation is a registered 501(c)(3) nonprofit. Our ICD-10 Code is Q87.85. Update your provider today!

We exist to help support MED13L families by Communicating, Connecting and Empowering!

🦓 Today’s the day! Strides for Stripes: Move for Mito starts now!From October 15 through November 15, we’re coming toget...
10/16/2026

🦓 Today’s the day! Strides for Stripes: Move for Mito starts now!

From October 15 through November 15, we’re coming together to raise $20,000 to fund our next study exploring mitochondria in MED13L brain cells and potential treatments.

You choose how you move, set your own goals, and pick a challenge duration within the campaign that works for you. One day, a week, or the full month!

Walking, rolling, running, dancing, therapy steps, and stroller miles. Every kind of movement counts.

Create your pledge page, invite friends and family to support you, and move for someone you love:
https://med13l.pledgestar.com/EventSignIn/

Let’s move MED13L research forward, together. 💙

Save the date.The 4th Annual Road Full of Promise returns to Joe’s Live in Rosemont on Saturday, January 30, 2027. A nig...
10/14/2026

Save the date.

The 4th Annual Road Full of Promise returns to Joe’s Live in Rosemont on Saturday, January 30, 2027. A night of music, community, and hope, benefiting the MED13L Foundation and hosted by the BJB Foundation.

Live music from Starlight City and DJ Angelo. VIP dinner at 6 PM, main event 7 to 11 PM.

Tickets go on sale November 1st. Set a reminder so you don’t miss them.

Love is deep as the road is long. Cure MED13L.

roadfullofpromise.org

10/14/2026

Caregiving doesn’t clock out. In the latest Growing Up with MED13L episode on our podcast, Voices of MED13L, Maria shares what 24/7 care really looks like for her daughter Katie, who is 34. Her reminder for other parents: you have to stay healthy and strong to keep your child strong.

Hear the full episode here: https://www.buzzsprout.com/2517161/episodes/19954498

Or wherever you listen to your favorite podcasts.

October is a lot of things this year. 💙AAC. ADHD. Autism. OCD. Dyslexia. Cerebral palsy. Disability employment and histo...
10/13/2026

October is a lot of things this year. 💙

AAC. ADHD. Autism. OCD. Dyslexia. Cerebral palsy. Disability employment and history. Each has its own moment this October.

For our families, these aren't separate months. They're everyday life.

MED13L Syndrome is one diagnosis, but it rarely travels alone. So many of our children live with the very things these months exist to recognize: communication differences and AAC, attention and learning differences, autism, anxiety and OCD, and the movement challenges of cerebral palsy.

Dyslexia shows how easily these overlaps hide. It isn't a reading problem at its core. It's a language processing disorder, about how the brain works with the sounds and building blocks of language, and reading is only where it becomes visible. For a child who already has an intellectual disability and significant speech and language differences, as most of our kids do, that specific deficit is extremely hard to isolate. It sits buried inside the whole language profile, and standard testing struggles to pull it out. So it often goes unnamed, and the support that comes with the name never arrives.

Our kids are part of every one of these October moments. And in May, we get one of our own: World MED13L Awareness Month. 💙

One syndrome. Many overlaps.

On behalf of our community, The MED13L Foundation funds research that helps answer important questions and identify pote...
10/12/2026

On behalf of our community, The MED13L Foundation funds research that helps answer important questions and identify potential paths toward treatment.

Researchers have found evidence of mitochondrial dysfunction in skin cells from people with MED13L syndrome. Now, we want to help them determine whether these tiny energy producers also function differently in neurons, the brain cells that send and receive information.

Funding this next step will help researchers understand whether mitochondria could be a useful target for treatment exploration.

🦓 Through Strides for Stripes: Move for Mito, we’re raising $20,000 to make this study possible.

Join us October 15–November 15. Choose your movement, set your goals, and pick a challenge duration that works for you. Every kind of movement counts!

Create your pledge page and help us fund the next step:
https://med13l.pledgestar.com/EventSignIn/

In the Know: MED13L Genetics and Family PlanningJoin us October 22, 6:30-8:00 PM for an educational webinar exploring ME...
10/11/2026

In the Know: MED13L Genetics and Family Planning

Join us October 22, 6:30-8:00 PM for an educational webinar exploring MED13L genetics, inheritance, and reproductive options. We’ll review the current genetic testing landscape, with an emphasis on reproductive genetic testing options available to families.

We’ll highlight established approaches and emerging technologies that can help families understand (and potentially impact) the chance of having another child with MED13L. The webinar will include additional resources and support for families navigating their family-building journey.

REGISTER TODAY: (Link in Bio)

https://us06web.zoom.us/meeting/register/X6MS5D0RQ5C9HuJyKh-QTg #/registration

Thank you to everyone who took our Adult Community Needs Survey. Your answers are already helping us understand what adu...
10/08/2026

Thank you to everyone who took our Adult Community Needs Survey. Your answers are already helping us understand what adults with MED13L and their families need most.

The results are in, and we've shared them in our September newsletter.

See what the community told us: https://med13l.kit.com/profile/posts

Not subscribed yet? Sign up at the same link so you don't miss future issues.

We’re counting tummy time minutes for our Strides for Stripes: Move for Mito pledge! 🦓 No matter how you move, you can p...
10/07/2026

We’re counting tummy time minutes for our Strides for Stripes: Move for Mito pledge! 🦓 No matter how you move, you can participate. Choose your activity, duration and goal to help fund MED13L research.

How will you move?

https://med13l.pledgestar.com/EventSignIn/

Today is World Cerebral Palsy Day. 💙Cerebral palsy is one of the most misunderstood diagnoses there is. Most people assu...
10/06/2026

Today is World Cerebral Palsy Day. 💙

Cerebral palsy is one of the most misunderstood diagnoses there is. Most people assume it comes from something that went wrong during birth. The reality is different. CP comes from differences in the developing brain, and most of those begin before a baby is born. Birth trauma accounts for only a small share of cases.

Genetics is a growing part of that picture, which is why today matters to our community. A diagnosis like MED13L and a cerebral palsy diagnosis can sit side by side. One explains the cause. The other describes how a child moves and what support will help.

For many families, a CP diagnosis is also what opens the door to the therapies, bracing, and equipment their child needs.

To every family raising a child with cerebral palsy, and to our MED13L families who know this path well, we see you. You're not in it alone. 💙

Low-energy day? Here’s ONE thing you can do in about five minutes that can help both your family and the MED13L communit...
10/06/2026

Low-energy day? Here’s ONE thing you can do in about five minutes that can help both your family and the MED13L community. 🦓

Register for Citizen Health.

It only takes a few minutes to get started and gives you access to a resource designed to help families navigating complex care organize and manage their child’s health information.

And by participating, MED13L families can also help build a clearer picture of our community’s medical journey — information that can support research, improve understanding of MED13L and help prepare us for future treatments and clinical trials.

Five minutes today can create a valuable resource for your family and help move our entire community forward.

🦓 Register for Citizen Health today.

https://www.citizen.health/join/med13l-foundation (Link in Bio)

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