The Million Dollar Bike Ride is a powerful movement bringing together hundreds of cyclists and advocates to fund critical research for rare diseases like #MED13L.
Donate & Participate here: charity.pledgeit.org/MillionDolla...
The online world can feel overwhelming after a #MED13L or #raredisease diagnosis. Social media is fast-moving, overstimulating, and full of information (or misinformation) that’s overwhelming to sort through.
The Dreamers Health app was built with that in mind. Check them out!
dreamershealth.com
Catch Sophie this week on Capitol Hill!
As you may recall, Sophie Seaver has been named a 2025 Rare Artist Awardee by @everylifeorg.bsky.social, joining advocates and meeting with Members of Congress. Congrats, Sophie!
Give her music a listen: www.youtube.com/watch?v=AHyd...
#med13l #RareDC2026
We’re thrilled to work with Michael Dryzer through his internship with the Orphan Disease Center’s GCSX program! 👏
He’ll be analyzing and harmonizing natural history data across our key platforms.
Now is the perfect time to update your #MED13L registries (lnk.bio/med13lfounda...)!
It takes less than 60 seconds to help move the #MED13L community forward.
Toma menos de 60 segundos ayudar a impulsar a la comunidad MED13L hacia adelante.
med13l.org/research-hub...
It’s Rare Disease Month and wearing #MED13L gear is an easy way to show support and raise awareness. Every purchase helps fund our work and amplify the voices of the MED13L community.
Use code WearItShareIt for 15% off our Bonfire (merch) shop this February.
Shop: www.bonfire.com/store/the-me...
Every completed Census helps create more moments like this, where families realize they are not alone.
Please take a few minutes to complete the #MED13L Census and help us continue building connection and community. 👇
med13l.org/research-hub...
By completing the #MED13L Census, you help us understand where families are located, plan future meetups and CombinedBrain road trips, and strengthen research efforts.
Complete the Census today!
lnk.bio/med13lfounda...
We just added a new FAQ that breaks this down clearly and reassures families that
• earlier doctors were not wrong
• co diagnoses are common and valid
• continuing evaluations can improve care
🔗 Read the full #MED13L Diagnosis FAQ here:
med13l.org/what-is-med1...
You could be unlocking extra funds for rare disease research just by donating. Ask your HR department today and use the QR Code (or this link: med13l.org/donate/) to get started!
#CorporateMatching #MED13L #RAREDISEASERESEARCH #careaboutrare #med13lsyndrome #RareDisease
We are excited and honored to share that Jake Wuest has joined the Board of Trustees!
After his son's diagnosis with #MED13L, the Wuest family has supported the Foundation. As a seasoned banking executive, Jake brings significant nonprofit board experience along with strong financial expertise!
Join us for a relaxed lunch with fellow MED13L families, Foundation staff, and researchers. It’s a wonderful opportunity to connect, share experiences, ask questions, and hear the latest updates from the #MED13L Foundation.
📍 Hudson Grille–Midtown, 942 Peachtree Street, Atlanta, GA 30309
🗓️ Get ready to mingle with a select group of guests at the exclusive 2025 Rare Reception - it’s going to be a night to remember!
Come join us, along with COMBINEDBrain, Citizen Health, and more for an evening of networking, delicious food, and exciting conversations.
#MED13L #RareDisease
They can’t talk…yet.
They can’t run or jump…yet.
We don’t have a cure…yet.
Time is on our side when we make every story count. Thank you to all families, caregivers, researchers, and doctors for contributing to every survey, donation, and research milestone.💙
#MED13L #MED13LSyndrome #RareDisease
AI Advocate (beta) helps families caring for rare conditions organize information, ask better questions, and better understand care decisions.
Sign up here: www.citizen.health/unlock!
#MED13L
Mary Clare's life was further complicated by the absence of a genetic diagnosis. After her passing at 53, her sister, Anne, discovered #MED13L and recognized Mary in every symptom.
Today, we honor Mary Clare by sharing her story and advocating for genetic testing.
lnk.bio/med13lfounda...
This night of music + community will help support the Natural History Study at Boston Children’s Hospital — a huge step toward clinical trial readiness for #MED13L Syndrome. 💙
Tickets will be available soon! Every ticket leads to more hope, more research, and more progress.
Dr. Alicia Campbell shares what she’s seeing in the lab in her Drug Repurposing presentation (now live on YouTube from the 2025 MED13L Research & Family Conference).
Metformin, type 2 diabetes drug, could show promise for #MED13L Syndrome and has introduced the discussion around drug repurposing.
Your child's data!
📬 If you’re signed up with Simons Searchlight, you may have received a Research Match email to join the ORCA Study.
This study could help determine whether it’s a meaningful way to measure communication ability in kids with rare neurodevelopmental disorders like #MED13L.
🚨 Last Call for Nasal Swabs! 🚨
We’re helping power the Unravel Biosciences x COMBINEDBrain drug repurposing study — and we need YOUR help!
- Nasal swab from an individual with #MED13L
- Nasal swab from a household sex-related individual (parent/sibling)
📩 Interested? Email rheilmann@med13l.org
🚨🎙️ STAY TUNED for our new #podcast, Voices of #MED13L! Hear our stories, learn from other rare families, and gain valuable insights from special guests.
Scan the QR code and send in your questions and give us a follow on Apple Podcasts, Spotify, and iHeart Radio!
⛳ Wishing the very best of luck to Ashley Mort and her community as they come together this weekend for the 4th Annual #MED13L Golf Tournament in Macomb, MI!
👉 Interested in hosting a fundraiser of your own? Reach out to us at info@med13l.org to learn more!
med13l.org/event/4th-an...
You’re invited to apply and serve on the Simons Searchlight Community Advisory Committee (CAC). The deadline to apply is Friday, September 12!
As a CAC member, you will have the chance to support Simons Searchlight’s research priorities. Learn more here:
docs.google.com/forms/d/e/1F...
#MED13L
👨🚒 Meet Jacob: a dedicated Firefighter/EMT and this week’s Sibs & Stripes feature!
Jacob’s sister, Molly, lives with #MED13L Syndrome, and alongside his siblings, he has embraced the roles of protector and advocate. His experience with MED13L has guided him toward a career as a first responder. 💙
Between Dec 2024 and July 2025, the number of #MED13L cases represented in PubMed jumped from 160 to 218. That growth is thanks to YOU for completing caregiver surveys.
When the research doesn’t reflect real-life experience, your input will help bridge the research gap.
lnk.bio/med13lfounda...
When Sarah discovered the reason for her child’s condition, she cried happy tears.
“I wasn’t alone anymore. For the first time in 35 months, I felt like I was truly reading about my child."
While every #MED13L story is different, we are inspired by the glimmers of hope each family brings. 💙
🎒Back-to-school prep requires more coordinating when your child has complex medical needs.
With mejo, you can:
-Organize your child’s medical and care profile
-Instantly share info with teachers, aides, and school nurses
📲 Learn more and download here: app.mymejo.com
#mejo #MED13L #RareDisease
While it can be frustrating that your doctor may not be familiar with your child’s #raredisease, Dr. Jennifer Bain of Columbia University and member of The #MED13L Scientific Advisory Board suggests focusing on managing the associated conditions to improve treatment plans and provide more context.
Meet Rowan Dias – a student, athlete, musician, and advocate dedicated to making sports more inclusive. As an intern at the #MED13L Foundation this summer, Rowan helped lay the groundwork for our upcoming podcast (stay tuned!)
Want to feature a MED13L sibling? Email info@med13l.org!
