Hello Reader,
As we moved through March, I’ve been inspired by the energy and engagement across the MED13L community. Every survey completed, every story shared, and every event attended strengthens our collective voice and accelerates progress.
This month, that energy took shape in action. We have been expanding opportunities for families to participate in research closer to home through our partnership with the COMBINEDBrain Road Show, bringing biospecimen collection (blood, stool, and saliva) directly to local family meetings. By reducing travel and burden, more families can contribute, and the MED13L biorepository grows stronger, accelerating scientific discovery.
We have also amplified community connection. From our upcoming Family Q&A with the Chief Scientific Officer to Phillies Night and the Million Dollar Bike Ride, there are more ways than ever for families to gather, share experiences, and celebrate one another. Each interaction, each mile ridden, and each ticket purchased directly supports research and strengthens our network.
Every action we take together, no matter how small it may feel, contributes to building a stronger foundation for research, care, and community. Thank you for showing up, for participating, and for helping make the MED13L community more connected and more powerful than ever.
With gratitude,
Contribute to research in a city near you!
The MED13L Foundation is partnering with the Combined Brain Road Show to bring biospecimen collection—blood, stool, and saliva—directly to rare disease family meetings across the country.
Fully trained staff collect samples onsite, allowing MED13L families to participate in research without additional travel or clinical visits. By collaborating with other rare neurodevelopmental communities, we reduce costs, minimize burden, and accelerate progress through a shared biorepository.
Interested in participating at one of the sessions here? Email: svolpe@med13l.org
Send Us Your Q&A Questions!
The MED13L Foundation is hosting a virtual Family Q&A with our Chief Scientific Officer, and we want your voice to guide the conversation.
We’ve created a short pre-event survey to better understand what families want to learn, what questions you have, and which topics matter most—from research and therapies to long-term outcomes and daily support.
Your input will directly shape the discussion and help ensure it is clear, practical, and meaningful for our community.
There are no wrong questions! Your voice is essential in helping guide the future of MED13L research and support.
⚾ Phillies Night for MED13L — April 28, 2026
We did it! 500 tickets sold! 🎉
Because of this incredible community effort, MED13L will be featured during the game with a special 1-minute video shown in the stadium, highlighting our families, our stories, and the power of coming together.
Join us on Tuesday, April 28 at 6:40 PM as the Philadelphia Phillies take on the San Francisco Giants at Citizens Bank Park for a night that’s now even more meaningful.
🎟 Tickets are $30 each, and every ticket includes a donation to The MED13L Foundation.
📍 Seating available in sections 412–434 and 301–310.
We’ll be celebrating members of our community—including Dylan, Logan, Ashley, Coral, TJ, and Zachary—while sharing MED13L with thousands of fans in the stadium.
At the end of the video, we’ll be inviting viewers to learn more by visiting our website—helping us spread awareness far beyond the stands.
Even if you can’t attend, you can still support by purchasing a ticket—your seat will be donated to a family who otherwise couldn’t go.
To purchase tickets, contact Kelly Sexton or Kim Sokorai
Venmo: @Kimberly-Sokorai | @Kelly-Sexton-12
Let’s pack the stands and make this moment happen together!
🚴 Ride for Rare — June 13, 2026
Join us for the Million Dollar Bike Ride on Saturday, June 13, 2026, and help turn every mile into meaningful progress for rare disease research.
This event is a powerful opportunity to raise awareness, build community, and support research for MED13L and other rare diseases.
Interested in creating a team? All rare disease communities are welcome to participate and make an impact.
Register or start your team today!
Caregivers Get a $20 Gift Card!
East Carolina University is conducting research on improving wellbeing among caregivers of individuals with developmental and epileptic encephalopathy (DEE), or those with co-occurring intellectual disability/developmental delay and epilepsy.
Who can participate?
Unpaid primary caregivers (age 18+) who speak English and care for a dependent with DEE or co-occurring epilepsy and intellectual disability/developmental delay.
What’s involved?
Participants may choose to complete:
An anonymous online survey (about 30 minutes), and/or
A virtual interview via Webex (approximately 30 minutes)
Topics include caregivers’ perspectives on their dependent’s functioning, as well as their own wellbeing, such as anxiety, depression, quality of life, social support, caregiver burden, coping, and self-efficacy.
🎁What you get in return:
Survey participants can enter a drawing for one of eighteen $25 Amazon gift cards
Interview participants will receive a $20 gift card
All participants receive a downloadable handout with mental health tips and resources
Get started:
Take the survey here.
📧 To participate in an interview or ask questions, contact: doranj21@students.ecu.edu
A New Space for Connection: Dreamers Health
We are excited to introduce a new space for conversation within the MED13L community: Dreamers Health.
This is not a replacement for our website, newsletter, or social media. Instead, it is an additional option for families who prefer a dedicated space for discussion outside of traditional social platforms.
We know that not everyone uses social media. And for some, logging in can feel overwhelming. Dreamers Health provides a focused, supportive environment where conversations can happen without the noise.
Inside this space, families will be able to:
• Connect with others living with MED13L
• Access shared resources
• Participate in moderated discussions
• Stay informed about events and updates
If you would like a space designed specifically for rare disease connection, we invite you to join us.
👉 Join the MED13L Community on Dreamers Health
We are building tools that meet families where they are, not asking families to meet us where they are not.
Calling MED13L Families – Share Your Story on The Voices of MED13L 🎙️
We are inviting members of the MED13L community to join us as guests on The Voices of MED13L Podcast. This podcast is a space to share real journeys, celebrate progress, and connect families through lived experience.
If you are interested in participating, please email vdias@med13l.org with the following information:
- Your name
- Your child’s name, gender, and age
- Your time zone
Participants should plan for a casual, one-hour interview. The conversation will be informal and focused on hearing your family’s journey and where your child is at this stage in their life.
We are also building a list of families interested in sibling interviews for a special Sibling Takeover episode scheduled for Wednesday, June 3 at 8:00 PM EST. If your child’s sibling may be interested in participating this summer, please note that in your email as well.
Thank you for helping us amplify the voices of our community. We look forward to hearing from you!
One of the most powerful ways to spread awareness for MED13L Syndrome is simply by wearing it. MED13L Foundation gear sparks conversations, builds visibility, and reminds families they are seen and supported. Every hoodie, tee, and tote is more than apparel. It is advocacy in motion. All proceeds directly support the Foundation and the work ahead.
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Complete the Census!
Starting this month during Rare Disease Month and continuing through May, MED13L Awareness Month, we are working toward a bold goal: 365 stories.
All it takes is 1 minute! 👉 Complete the MED13L Patient Census today.
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💙 Together, we make every MED13L story count.
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