The Med13L Foundation

Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠

[The Med13L Foundation @Med13L_Fdn]

Great news! #MED13L now has its own ICD-10 code! This milestone is crucial for accurate diagnosis, better treatment options, and insurance coverage. It's a major win for our rare disease community, paving the way for more focused research and care. 🧬"#RareDisease #ICD10

[The Med13L Foundation @Med13L_Fdn]

Despite all odds, moving to NY changed my life 🌟 I’m learning to chew like a big girl & school is helping me find new ways to communicate. I’m proud to be part of the MED13L family & can't wait to meet more kids like me. My story is just beginning! #MED13LAwarenessMonth #Rare

[The Med13L Foundation @Med13L_Fdn]

Addie's a 12-year-old adventurer who’s explored 20 states, loves yellow, and shines with curiosity + charm. 💛 Thanks to the Med13L Foundation, we’ve found support, community & even Able Athletics. Here’s to more family meetups & milestones! #Med13LAwarenessMonth #Rare #MED13L

[The Med13L Foundation @Med13L_Fdn]

🚨 Last chance! Only a few rooms left in the #MED13LMeetup2025 hotel block!

Deadline to book is May 30—don’t miss out!

🔗 Secure your spot now: https://t.co/i7kaL0IsP1

#RareDisease #Research #FamilyConference

[The Med13L Foundation @Med13L_Fdn]

#MED13LAwarenessDay #CureMED13L #RareandRemarkable
#MED13L #LoveConquersRare
#RareDisease #RareDiseaseAwareness

[The Med13L Foundation @Med13L_Fdn]

Our sweet, smiley 11-year-old Ilan has MED13L syndrome. Since his diagnosis at 2, we’ve searched tirelessly for answers where there once were none. We're so grateful to the parent-led effort fighting for a cure —your work gives us hope. 💙

#MED13LAwareness #CureMED13L #Rare

[The Med13L Foundation @Med13L_Fdn]

To the fierce, loving, unstoppable moms of MED13L—
Today is for you.
Your strength builds futures, your love builds community.
Happy Mother’s Day 💙

#MED13LMoms #RareAndResilient #MED13LFoundation #RareDiseaseMoms

[The Med13L Foundation @Med13L_Fdn]

@BainBrainLab You sure do!!

[Bain Brain Lab @BainBrainLab]

GeneReviews - helpful for parents, clinicians and educators of those with rare disease. Here's a new one!
@Med13L_Fdn
https://t.co/aducLlN3qO
https://t.co/9zZGgFYNhF

[The Med13L Foundation @Med13L_Fdn]

@BainBrainLab Thank you!!

[The Med13L Foundation @Med13L_Fdn]

"Ryan’s diagnosis changed everything—we now cherish the little things & embrace patience. We went from 'she may never walk' to 'she’s everywhere!' 💪💖 We’re bringing back Ryan Reports to share her MED13L journey with others. Stay tuned."

#MED13LAwarenessDay #CureMED13L #Rare

[The Med13L Foundation @Med13L_Fdn]

🚀 Breakthrough for MED13L kids!

New study shows motor-based therapy helps speech apraxia (CAS):
• Move + speak = better results
• Targets core challenges
• Start before age 5

#MED13L #ApraxiaAwareness #SpeechTherapyWorks #MotorLearning #Neurodiversity #RareandRemarkable

[The Med13L Foundation @Med13L_Fdn]

Miss the MED13L Family Zoom? Catch the full recap on YouTube! 🎥

Dr. Alicia Campbell breaks down the updated GeneReview + answers your top research questions. We also share details on the upcoming Boston (Waltham, MA) family meetup!

Watch here: [https://t.co/ZIVTEOJx4z]

[The Med13L Foundation @Med13L_Fdn]

💪 Need a #MothersDay gift for a #MED13L mom? Our "Strong Like a Mother" collection is perfect for superhero moms! 👕

Shop now: https://t.co/S1uKWotCdo

#StrongLikeAMother #RareMom

[The Med13L Foundation @Med13L_Fdn]

We’re thrilled to launch the MIND Study—a 3-year natural history study of #MED13L at Boston Children’s. Kicking off at our July Meetup, this $250K project is powered by your stories. Let’s make every story count. 💙 https://t.co/WrdKY8PMx7 #NHS #PatientAdvocacy

[The Med13L Foundation @Med13L_Fdn]

"Maja loves cuddles, has a good sense of humor & shines when singing & dancing, which brings her joy & helps her express emotions. Despite the complexities of her diagnosis, she's a source of strength & inspiration to those around her. ​​#MED13LAwarenessDay #CureMED13L #Rare

[The Med13L Foundation @Med13L_Fdn]

We are shining a light on family stories to raise awareness of MED13L syndrome! "The MED13L Foundation empowered me with tools, knowledge, and the confidence to make informed choice & it gave my voice the platform it needed." 💙

#MED13LAwarenessMonth #Rare #CureMED13L

[The Med13L Foundation @Med13L_Fdn]

"I am glad to be part of the MED13L parents' community. Martínek is the only one in his class who has this syndrome, so we'll print out some information, have a discussion, draw pictures, and go outside together with his classmates on MED13L Awareness Day." #CureMED13L #Rare

[The Med13L Foundation @Med13L_Fdn]

May is MED13L Awareness Month! We're featuring stories from caregivers about how they plan to celebrate their rare, remarkable children. Let's raise awareness & show the world how hard we are working to provide the best life possible for our courageous families! #MED13 #Rare

[The Med13L Foundation @Med13L_Fdn]

Meet Molly! 🎨 She's 15, loves art, and donates her pieces to Make-A-Wish Wisconsin to help grant wishes. Diagnosed with MED13L in 2020, her family is grateful for the Foundation's support & wouldn’t want to navigate this journey without it!". 💙 #MED13LAwarenessDay #Rare

[The Med13L Foundation @Med13L_Fdn]

Christopher embraces life with gusto—whether he's shooting hoops, rocking to ZZ Top, or sharing time with his cherished siblings. His heart is big, his smile even bigger. 💛 Let’s raise awareness for MED13L & all rare diseases!
#MED13LAwarenessDay #LoveConquersRare #OurAmazingSon