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!

09/02/2026

🦓 Braggin’ Stripes: Meet Elle!

Elle started school yesterday and came home with a few worksheets to share. Her parents noticed something especially exciting: this is the most they’ve ever seen her color within the lines!

It may seem like a small moment, but for Elle, it represents meaningful progress in her vision, motor planning and fine motor skills and we’re excited to celebrate it with her family. 🩵

That’s what Braggin’ Stripes is all about. Recognizing the accomplishments, big and small, that deserve their moment.

Have an inchstone, milestone or a special moment you’d like to share with the community this school year? We’d love to celebrate it with you.

Send your Braggin’ Stripes submissions to [email protected]

08/31/2026

Back to school looks a little different for our families.

The MED13L Foundation has created two free handouts for back to school, to help teachers and staff better understand your child this school year.

The Meet Me form introduces your child in their own voice, including their strengths, how they communicate, and what helps on a hard day. The Understanding MED13L at School guide gives teachers a clear overview of what MED13L can look like in the classroom.

We encourage you to fill them in, print them, and share them with your child's team as we start the school year.

Both handouts are free to download:

Understanding MED13L:https://med13l.org/wp-content/uploads/2026/08/PAGE-1-Understanding-MED13L-Handout.pdf

Meet Me Form:https://med13l.org/wp-content/uploads/2026/08/PAGE-2-Meet-Me-Form.pdf

08/28/2026

This December, , , and families will be in the same room for the very first time at the (Mini) Meeting of the MEDs in Denver.

This is more than a gathering. It is a real step in building the MED Alliance, and in asking a bigger question together: what becomes possible when three communities work together?

Families will hear from researchers and advocacy leaders across all three conditions, revisit what we have learned since our 2025 Conference, and connect over lunch, discussion tables, and time for questions. There will also be a chance to take part in research onsite through the COMBINEDBrain Roadshow.

December 4, 2026 · Grand Hyatt Denver, Denver, Colorado

We are gathering alongside the Cure SYNGAP1 and SLC6A1 International Scientific Symposium and Family Conference, so several communities will be under one roof.

Registration and pricing are coming soon. The one thing to do now is book your discounted room by November 10. Scan the QR code or visit https://www.hyatt.com/events/en-US/group-booking/DENRD/G-SLC6

Can't make it to Denver? Our 2027 Summer Family and Research Conference is on the horizon.

08/27/2026

One year of the MIND Study. 30 individuals with MED13L. 30 families helping build a deeper understanding of MED13L Syndrome.

For families, natural history research is about more than collecting data, but about making sure our children are truly seen, understood, and recognized for what they can do.

MED13L Foundation President, Katie Boychuck, shared her experience after completing Year One with her son, Collin, and the impact of seeing his strengths and receptive language shine through the assessments.

This summer, families are returning to Boston for Year Two. By following the same individuals over time, researchers can build the data needed to inform future clinical trials and treatments.

We are incredibly grateful to every participating family and to the research team at Boston Children’s Hospital for making this work possible. 💙

08/26/2026

🗓️ Save the date! We are hosting a community meetup in Denver, Colorado on Friday, December 4, 2026, and we would love to see you there.

It will be a relaxed in-person gathering (not a replacement of the 2027 Meetup). You’ll get to meet our Chief Scientific Officer and members of our board, hear more about the biorepository and the part it plays in moving MED13L research forward!

We will also have patient advocacy groups and researchers from across the rare disease space joining us, so you can connect with the wider community all in one place.

That evening, the Rare Reception offers one more opportunity to gather, relax, and keep the conversations going.

Location and exact timing are still coming together. For now, save the date and stay tuned!

08/21/2026

Join us for the 5th Annual Golfing for a Cure benefiting the MED13L Foundation! Spend the day on the course, enjoy great food and drinks, and come together with an incredible community, all while supporting research and advocacy for individuals and families affected by MED13L.

📅 Sunday, September 13, 2026
⏰ 8:00 AM Shotgun Start

What to expect:
• 18 holes of golf
• Dinner-only option
• Raffle baskets + 50/50 raffle
• Great food, drinks & even better company

Over the past four years, this amazing community has raised more than $100,000 to advance the MED13L Foundation’s mission! And 100% of proceeds go directly to the Foundation.

Grab your friends, form a team, or join us for dinner. Every ticket and contribution helps move us closer to a cure. Thank you to Ashley Mort for leading another year of this event!

Register today:
https://secure.qgiv.com/for/med13lfoundation/event/golftournament_michigan

08/19/2026

✏️ Back to school season is here, and we know it brings a lot with it. For many rare disease families, this time of year can feel challenging and overwhelming.

Through all of it, the small steps still matter.

So this fall, share your back to school photos and stories.

👉 Tag us in your posts, or email [email protected] to be featured on our page. We’d love to recognize your family and celebrate the little milestones along the way.

Also: stay tuned this week for our “Back to School: About Me” sheet that we’ve created to introduce your child and explain MED13L to their teachers📝

08/14/2026

Being a rare disease family member can require wearing many hats. You don’t have to do it all alone.

Global Genes offers free concierge support for families and patient advocates who are navigating rare conditions. Their team helps you track down resources, connect with other families who get it, and figure out the next step when the road ahead isn’t clear.

We’re so grateful to Global Genes for creating tools like this for our community. The MED13L Foundation is proud to stand with them as part of the Global Advocacy Alliance, working together so that no family has to walk this path by themselves.

https://globalgenes.org/rare-disease-patient-services/

(Note: Those photographed are not affiliated with Global Genes).

08/12/2026

📢 Ricardo Ramirez, PhD, our Chief Scientific Officer at the MED13L Foundation, is opening the door to direct conversations with families through regular virtual office hours.

These informal sessions will give families an opportunity to:

• Ask questions about research
• Learn more about ongoing and future studies
• Share perspectives and experiences
• Connect directly with someone helping lead the Foundation’s research efforts

No formal agenda or expectations. Just an open conversation.

Our commitment is simple: to meet every family in our community.

Details on how to participate and schedule an office hour will be shared soon. 👇 Comment below if you are interested.

08/04/2026

Congratulations to Victor Rebelo Procaci, MD, on being selected for a two-year Translational Genomic Medicine Fellowship at Boston Children’s Hospital

and welcome to the MED13L team! 🎉

Dr. Procaci’s work will help deepen our understanding of MED13L Syndrome through clinical phenotyping, data analysis, and the development of outcome measures and biomarkers needed for future clinical trials. We are excited to have him joining this important work!

Learn more: https://translationalneurosciencecenter.org/news_events/2026-fellowship-awardees/

Address

Barrington, NJ
08007

Website

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

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