MEF2C Family Foundation

06/11/2026

🐴 Spotlight on Hippotherapy!
Hippotherapy—therapy done on horseback—can be an incredible tool for individuals with MEF2C-related disorders. With the help of a licensed therapist, the movement of the horse helps target motor, sensory, and communication goals in a fun, engaging way.

🌟 Benefits can include:
- Improved balance and core strength
- Better coordination and posture
- Increased sensory regulation
- Enhanced speech and communication skills
- Boosted confidence and emotional well-being

💡 Facing barriers to accessing hippotherapy? Therapeutic riding may be an option too! While not led by a therapist, it still offers meaningful physical and emotional benefits.

📸 If you’ve tried hippotherapy or therapeutic riding and want to share your child’s experience, don’t forget to submit photos or videos through our MEF2C Moments form (bit.ly/MEF2Cmoments)—we’d love to celebrate your story!

06/08/2026

In collaboration with the KCNT1 Epilepsy Foundation, the Neurology Social Services Network (NSSN) invite us to join them for an upcoming DEEP webinar, Understanding A*Os & Informed Consent, on June 30.

This educational webinar will feature Dr. Olivia Kim-McManus, who will discuss antisense oligonucleotide (A*O) therapies, informed consent, and important considerations for families navigating emerging treatment options. The webinar will also include a parent panel and audience Q&A.

Learn more and register here:
https://deepconnections.net/event/understanding-asos-informed-consent/

Child Neurology Foundation
Rare Epilepsy Network: REN

06/05/2026

🌟 𝐌𝐄𝐅𝟐𝐂 𝐌𝐢𝐧𝐢 𝐑𝐞𝐭𝐫𝐞𝐚𝐭 𝐖𝐢𝐧𝐧𝐞𝐫 – 𝐌𝐚𝐲 🌟

Congratulations to Bianca Davies , mom to MEF2C Star Noah, our May Mini Retreat winner! 💙

Caregiving in the rare disease world can be exhausting, isolating, and nonstop. These retreats are one small way we hope to give parents a chance to breathe, reset, and take a little time for themselves.

Bianca, thank you for being part of this community and for all you do for Noah every single day. We hope this retreat brings you some well deserved rest and a few quiet moments just for you. 💙

06/01/2026

🎉 Happy Birthday to our amazing MEF2C Stars celebrating in June!

🎂 Taylor & Felipe – June 3
🎂 Peter – June 4
🎂 Shannon – June 9
🎂 Valentina – June 14
🎂 Ruby – June 16
🎂 Lennox – June 17
🎂 Logan – June 19
🎂 Reagan – June 21
🎂 Hamish – June 27
🎂 Wilder, Gianni & Samaël – June 29

We’re so grateful for each of these incredible MEF2C Stars and the families who support them every day. 💙 We’d love to celebrate with you — share your birthday photos in the comments or tag us so our community can join in!

05/31/2026

🍁 Ontario families — don’t miss this summer resource from Autism Ontario! ☀️

From camp opportunities to summer support funding, this could help make summer more accessible for your family 💙

Learn more here:

APPLY NOW

05/25/2026

🌟 MEF2C Mini Retreat Giveaway – May 🌟

Caring for a loved one with a rare disorder can be exhausting, emotionally and physically. That’s why each month, the MEF2C Family Foundation offers a small reminder to our caregivers that they matter too. 💙

Our MEF2C Mini Retreat is a chance for one caregiver to receive a little time to rest, recharge, and take a moment for themselves — because showing up every day for your family takes incredible strength.

✨ Enter by May 31st
🌎 Open to families in the U.S. and Canada
💫 If you’ve entered before, you are still included — no need to re-enter!
Enter here: bit.ly/MEF2Cretreat

Thank you to every caregiver in this community for all that you do. We see you, we appreciate you, and we’re honored to walk this journey together. 💙

05/22/2026

“𝑾𝒆 𝒋𝒖𝒔𝒕 𝒘𝒓𝒂𝒑𝒑𝒆𝒅 𝒖𝒑 𝒅𝒂𝒚 2 𝒐𝒇 𝒕𝒉𝒆 𝑹𝒂𝒓𝒆 𝑨𝒅𝒗𝒐𝒄𝒂𝒕𝒆 𝑫𝒆𝒗𝒆𝒍𝒐𝒑𝒎𝒆𝒏𝒕 𝒘𝒐𝒓𝒌𝒔𝒉𝒐𝒑 𝒉𝒆𝒓𝒆 𝒊𝒏 𝑩𝒐𝒔𝒕𝒐𝒏!
𝑰𝒕’𝒔 𝒃𝒆𝒆𝒏 𝒔𝒖𝒄𝒉 𝒂𝒏 𝒆𝒙𝒄𝒊𝒕𝒊𝒏𝒈 𝒘𝒉𝒊𝒓𝒍𝒘𝒊𝒏𝒅 𝒐𝒇 𝒄𝒐𝒏𝒏𝒆𝒄𝒕𝒊𝒐𝒏 𝒑𝒐𝒊𝒏𝒕𝒔: 𝒍𝒆𝒂𝒓𝒏𝒊𝒏𝒈 𝒂𝒃𝒐𝒖𝒕 𝒆𝒗𝒆𝒓𝒚𝒕𝒉𝒊𝒏𝒈 𝒇𝒓𝒐𝒎 𝒕𝒉𝒆 𝒔𝒄𝒊𝒆𝒏𝒄𝒆 𝒃𝒆𝒉𝒊𝒏𝒅 𝑨𝑺𝑶 𝒕𝒉𝒆𝒓𝒂𝒑𝒚 𝒕𝒐 𝒉𝒐𝒘 𝒕𝒐 𝒑𝒊𝒄𝒌 𝒂 𝒗𝒂𝒄𝒄𝒊𝒏𝒆 𝒎𝒂𝒏𝒖𝒇𝒂𝒄𝒕𝒖𝒓𝒆𝒓. 𝑨𝒏𝒅 𝒊𝒕’𝒔 𝒃𝒆𝒆𝒏 𝒂𝒏 𝒂𝒎𝒂𝒛𝒊𝒏𝒈 𝒐𝒑𝒑𝒐𝒓𝒕𝒖𝒏𝒊𝒕𝒚 𝒕𝒐 𝒎𝒆𝒆𝒕 𝒐𝒕𝒉𝒆𝒓 𝒓𝒂𝒓𝒆 𝒅𝒊𝒔𝒆𝒂𝒔𝒆 𝒂𝒅𝒗𝒐𝒄𝒂𝒕𝒆𝒔 𝒘𝒉𝒐 𝒂𝒓𝒆 𝒈𝒊𝒗𝒊𝒏𝒈 𝒊𝒕 𝒕𝒉𝒆𝒊𝒓 𝒂𝒍𝒍. 𝑰𝒕’𝒔 𝒊𝒏𝒔𝒑𝒊𝒓𝒊𝒏𝒈.

𝑨 𝒉𝒖𝒈𝒆 𝒕𝒉𝒂𝒏𝒌 𝒚𝒐𝒖 𝒕𝒐 𝒕𝒉𝒆 𝑹𝒂𝒓𝒆 𝑬𝒑𝒊𝒍𝒆𝒑𝒔𝒚 𝑵𝒆𝒕𝒘𝒐𝒓𝒌, 𝑮𝒍𝒐𝒃𝒂𝒍 𝑮𝒆𝒏𝒆𝒔, 𝒂𝒏𝒅 𝑴𝒂𝒉𝒛𝒊 𝑻𝒉𝒆𝒓𝒂𝒑𝒆𝒖𝒕𝒊𝒄𝒔 𝒇𝒐𝒓 𝒎𝒂𝒌𝒊𝒏𝒈 𝒕𝒉𝒊𝒔 𝒉𝒂𝒑𝒑𝒆𝒏.”

- Caroline Claflin, Director

05/14/2026

A huge thank you to Governor Jared Polis for once again proclaiming May 14th as MEF2C Awareness Day in Colorado for the second year in a row. 💙

Your continued recognition helps shine a light on MEF2C-related disorders, including MEF2C Haploinsufficiency Syndrome (MCHS), and the individuals and families impacted every day. Awareness leads to understanding, advocacy, research, and hope for our rare disease community.

We are grateful for Colorado’s ongoing support in helping amplify the voices of those living with MEF2C-related disorders and reminding families that they are seen and supported.

05/14/2026

A special thank you to Office of the Governor Greg Abbott and the state of Texas for once again proclaiming May 14th as MEF2C Awareness Day for the second year in a row. 💙

This proclamation helps shine a light on MEF2C-related disorders, including MEF2C Haploinsufficiency Syndrome (MCHS), and brings greater awareness to the individuals and families impacted every day.

Awareness starts at the local level, and every proclamation helps amplify the voices of our rare disease community. Thank you for continuing to stand with MEF2C families and helping spread awareness, education, and hope across Texas.

💙