Hello MED13L Community,
June feels like a turning point. May was a big month for us. You all raised nearly $10,000 during MED13L Awareness Month, and I am still incredibly moved by that. Every fundraiser, every share, and every dollar came from someone who showed up for this community with purpose. Thank you.
What I want you to see in this newsletter is what that energy is helping make possible. The Clinical Care Resource Packet that a Notre Dame student team developed with us this spring is now out in the world. Additionally, MED13L rare sibling Rowan Dias stood in front of a room of drug developers in Boston and made the case that patient organizations like ours are doing investment work that the industry is not fully recognizing.
We also have two surveys running right now that I want to make sure you know about. First, the Adult MED13L Survey matters more than many people realize. We do not have enough information about what life looks like for community members who are 18 and older, and that gap affects everything from research design to advocacy efforts.
Second, our NSAID Survey is helping us better understand the impact of NSAIDs such as ibuprofen (Advil/Motrin) and naproxen (Aleve) within our community. Your participation can help us learn more about potential patterns and experiences.
Please share these surveys throughout the MED13L community to help us find more answers.
I am grateful for every one of you.
May is MED13L Awareness Month raised nearly $10,000 thanks to the generosity of our families and donors, directly supporting research, education, and community programs.
Thank you to every fundraiser, donor, artist, and advocate for showing up and supporting our mission!
Introducing the MED13L Clinical Care Packet 📢
The MED13L Foundation partnered this spring with a team of undergraduate students through the University of Notre Dame's Rare Advocacy and Research Experience (RARE) Project Network, a new initiative that pairs student teams with rare disease nonprofits for semester-long, project-based collaborations.
In collaboration with these students, we developed a new Clinical Care Packet designed to help families and healthcare providers navigate MED13L Syndrome with greater confidence.
This resource includes an overview of MED13L Syndrome, commonly reported symptoms and co-occurring conditions, care considerations, therapy and medication tracking tools, appointment worksheets, and additional resources for caregivers and clinicians. The packet is intended to help families organize important medical information and facilitate productive conversations with care teams.
Whether you're preparing for a new specialist appointment or looking for a comprehensive resource to share with your child's healthcare providers, this packet is designed to support you every step of the way.
Our student team spent the semester building this resource from the ground up. You can read more about the program and this year's inaugural cohort here.
🚴Million Dollar Bike Ride Success!
This year marked The MED13L Foundation’s first time participating in the Million Dollar Bike Ride, hosted by the University of Pennsylvania in Philadelphia, and we are incredibly grateful to everyone who helped make it such a meaningful experience!
A special thank you to our team captains, Rowan and Christian Dias, for leading The MED13L Foundation Team and helping us raise nearly $1,000 in support of MED13L research.
We are also deeply grateful to the families who traveled from near and far to ride, fundraise, connect, and raise awareness for our MED13L community. It was a wonderful opportunity to come together, support one another, and advance research that matters so much to our families.
This was our first year participating, and we hope it is the first of many. We would love to see even more families join us next year! Thank you to all who supported.
Calling Adults with MED13L Syndrome (18+)
The Foundation wants to know what we can do to better support the adult MED13L community, but we need you to tell us.
Much of what researchers currently know about MED13L Syndrome comes from children, and much of what the Foundation has built so far reflects that. To better understand how MED13L evolves across a lifetime, and to make sure our programs and resources are actually meeting the needs of adults and their caregivers, we need to hear from the people living that experience today.
We thank all families who joined the MED13L Q&A Session who highlighted this as a key concern.
By participating in our Adult MED13L Survey, you can help researchers better understand the natural history of MED13L Syndrome, document how symptoms, strengths, and support needs change over time, identify patterns that may help guide future research and care, and ensure that adult experiences are represented in the MED13L story. And you can help us understand where the Foundation needs to show up differently for this part of our community.
We want to hear from you — not just about symptoms and medical history, but about what you need, what you wish existed, and what would actually make a difference for your family.
Take the survey. Tell us what matters to you.
From Advocacy to Investment Insight
Rowan Dias presented at the World Orphan Drug Congress 2026 in Boston with his research poster, The Invisible Investors: Patient Advocacy Organizations as Uncredited Capital Allocators in the Orphan Drug Pipeline, A Case Study of the MED13L Foundation.
His work highlights the often-unseen role of patient organizations in funding and de-risking early rare disease research—acting as “invisible investors” long before industry involvement, yet rarely receiving recognition for that impact.
The MED13L Foundation was proud to support Rowan in sharing this perspective, with our Chief Scientific Officer, Ricardo Ramirez, attending the congress alongside him.
Moments like this reflect the growing voice of our community in shaping the future of rare disease research.
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.
🚨 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.
Become a MED13L Regional Ambassador
Help us make MED13L support and awareness truly global.
First, a genuine thank you to the Ambassadors who are already out there doing this work. You are showing up for families in your regions and it matters more than you know.
We are looking to grow this program, and we want to hear from anyone around the world who feels called to help.
We know everyone reading this already has a full life. You love someone with MED13L Syndrome, which means your time and energy are not exactly sitting idle. This role is designed with that in mind. We are asking for no more than five hours a month, and most months it will be less than that. What we are really asking for is someone who cares about making sure families in their corner of the world do not feel alone in this.
As a Regional Ambassador, you would help share Foundation updates and awareness campaigns on social media, connect local families with the global MED13L community, support communication in your native language, and collaborate with us on announcements, surveys, and research initiatives. Whether you are a parent, caregiver, family member, or self-advocate, your voice matters here.
If this sounds like you, email info@med13l.org and tell us a little about where you are and why you want to get involved. We would love to hear from you.
This Weekend! Family Meetup in MI 💙
Families attending the COMBINEDBrain Roadshow in Ann Arbor (or who will be in the Michigan area) are invited to join us for a casual MED13L family meetup!
🗓️Saturday, June 27
⏰ 3:00–5:00 PM
📍 Harvest Market (910 Briarwood Cir, Ann Arbor, MI 48108)
After a day of participating in research, come connect with other MED13L families, share experiences, and build community in a relaxed, family-friendly setting. Whether you’re attending the Roadshow or simply live in the area, we’d love to see you there.
✉️RSVP to febtue@gmail.com
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. If you have not listened yet, you can find it here. Each episode is a real conversation with a family living with MED13L Syndrome. No scripts, no polish, just honest stories about the journey. This season we are focused on Growing Up with MED13L, and we want to hear from families at every stage.
Interviews are casual and run about an hour. If you are interested, email vdias@med13l.org with your name, your child's name, gender, and age, and your time zone.
We are also putting together a special Sibling Takeover episode this summer. If your child has a sibling who might want to participate, please mention that in your email too.
💙 Together, we make every MED13L story count.
In Case You Missed It:
