MED13L Foundation

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!

💊 Have you noticed changes in your child while they were taking medications such as ibuprofen (Advil/Motrin), acetaminop...
06/03/2026

💊 Have you noticed changes in your child while they were taking medications such as ibuprofen (Advil/Motrin), acetaminophen (Tylenol), naproxen (Aleve), or similar medications for fever or pain?

Some MED13L families have shared observations of changes beyond symptom relief, including sleep, speech, attention, mood, and other areas. At this time, we do not know whether these observations are related to the medications, illness recovery, or other factors. That’s why we need more information from our community.

📝 If your child has ever taken one of these medications, please take a few minutes to complete our survey. Positive experiences, negative experiences, no noticeable changes, and side effects are all valuable and important to report!

Together, your responses may help guide future research and improve our understanding of MED13L Syndrome.

👉 Survey (in bio or here): https://docs.google.com/forms/d/e/1FAIpQLSdDwZ1Phn8glvCyjkLk-eM4qw0f_mcYXvcQDnfHj7BcpEkG2w/viewform

‼️ IMPORTANT: We are not recommending or consenting anyone to take any medication at this time. Please do NOT start, stop, or change any medication based on this update. Always consult your child’s physician before making any decisions about medications.

06/02/2026

Looking for a meaningful Father’s Day gift?

Celebrate the dads, grandfathers, and father figures in your life with MED13L Foundation apparel that gives back. Whether you’re raising awareness, supporting a loved one with MED13L, or simply standing alongside our community, our merchandise is a great way to honor our community.

Until June 30th, use code DAD15 for 15% off *select styles.*

Every purchase helps support research, awareness, and programs that serve families around the world.

Shop now (link in bio) or: https://www.bonfire.com/store/the-med13l-foundation/

As World MED13L Awareness Month has come to a close, we are filled with immense gratitude.Thank you to everyone who dona...
06/01/2026

As World MED13L Awareness Month has come to a close, we are filled with immense gratitude.

Thank you to everyone who donated, fundraised, participated in auctions, shared our posts, told their stories, advocated for the rare disease community, and helped spread awareness. Every action, both big and small, has moved our mission forward.

Because of your support, we are funding research, increasing awareness, connecting families, and creating hope for those living with Syndrome.

To our families, supporters, volunteers, researchers, ambassadors, and advocates: thank you for standing with us. We are stronger because of you.

Together, we are building a brighter future for the MED13L community.

To those who donated, the prize winners will be contacted this week! Stay tuned! 🎁

⭐️ How to continue advocacy: Keep completing our surveys and sharing your child’s medical data through our databases.

05/30/2026

🍋 World MED13L Awareness Month is coming to an end, and we are so grateful for all of the support, solidarity, and advocacy shown throughout the month.

Because of this incredible community, rare disease research continues to move forward and families affected by MED13L syndrome feel seen, supported, and connected. Thank you for helping make a lasting impact. 🧪💙

⏰ There’s still time to show your support and donate to this lemonade stand virtually. Click the link in our bio or the link below:

https://secure.qgiv.com/event/med13lfoundationp2p/account/2349840/

05/29/2026

A glimpse into the life of a MED13L mom: Kyla. 💙

Behind every one of Nixxon’s milestones are countless appointments, therapies, routines, and moments of love and support.

Thank you to the parents and caregivers sharing their journeys this MED13L Awareness Month. Your stories create awareness, validation, and connection with other families. 🫶

Today, Thompson turns 4!💙Thompson is a fun-loving boy from Fort Worth, TX who loves baseball, golf, soccer, basketball, ...
05/28/2026

Today, Thompson turns 4!💙

Thompson is a fun-loving boy from Fort Worth, TX who loves baseball, golf, soccer, basketball, monster trucks, and spending time with his little brother. His journey with MED13L has included delayed speech, delayed gross motor skills, impaired vision, and metatarsus adductus.

Join us in celebrating Thompson’s birthday by making a $4 donation to support MED13L research, awareness, and families around the world.

Every child with has a story and a future worth fighting for.

Thank you to this incredible community for continuing to show up with so much love and support for our families.

Send Thompson a birthday wish 🎂 using the Donate link in bio or the link below! 👇

https://secure.qgiv.com/event/med13lfoundationp2p/account/2372827/

🧪 Our Spring 2026 Research Update highlights important progress across natural history research, drug repurposing, bioma...
05/27/2026

🧪 Our Spring 2026 Research Update highlights important progress across natural history research, drug repurposing, biomarker development, and gene therapy efforts for Syndrome.

Every family participating in research, sharing their story, fundraising, and supporting the Foundation is helping move this work forward. Thank you for being part of this progress and this community, and thank you to Ricardo Noel Ramirez for putting it together.

Read the full update here: https://med13l.org/spring-2026-research-update/ or at the link in our bio.

(This update is also available in 5 languages.) 🩵

As we recognize MED13L Awareness Month, we want to share a story from Ivan, a physical therapist in the Philippines who ...
05/27/2026

As we recognize MED13L Awareness Month, we want to share a story from Ivan, a physical therapist in the Philippines who has worked with Kaden (age 7) for the past two years. 💙

When Ivan first met Kaden, he required a stroller for mobility and needed moderate to maximal assistance to stand. Through individualized therapy, patience, and consistency, Kaden gradually progressed from assisted walking to inclined treadmill walking with minimal assistance.

Today, Kaden spends time playing at the playground with his cousins and can climb stairs before going down the slides — meaningful milestones in strength, coordination, and independence. ✨

But according to Ivan, one thing has made the biggest difference in Kaden’s unique journey:

“The support of Kaden’s loving and dedicated family.”

Stories like this remind us that no two MED13L journeys are the same. Today, we celebrate Kaden’s tremendous milestone and thank Ivan for being such an attentive physical therapist.

💙

Address

Barrington, NJ
08007

Website

https://lnk.bio/med13lfoundation, https://rare-x.org/med13l/

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