Leeds Half Marathon fundraiser for Elijah and the Mefties

Help Me Change Lives: Support Elijah and the MEF2C Community

Hello everyone,

My name is Lorena, and I am the proud mother of Elijah, a brave 5-year-old in West Yorkshire living with MEF2C Haploinsufficiency Syndrome (MCHS). Our journey has been filled with challenges, but also with hope and determination. You can read more about our story here(https://geneticalliance.org.uk/news/elijahs-story/).

On May 11th, 2025, I will be running the Leeds Half Marathon to raise funds for Elijah and the entire MEF2C community. Our goal is to raise $500,000 as a community, to complete the Natural History Project with Weill Cornell, which is crucial for meeting the qualifying criteria for clinical trials. These trials are a vital step towards bringing the treatment currently under development at MUSC and the Pathways to Hope project (https://shorturl.at/q7Mhi) to patients, literally transforming their futures.

Why This Matters:

MEF2C Haploinsufficiency Syndrome (MCHS) is a rare genetic disorder that affects cognitive and physical development.

Every child should be able to play, laugh, and explore the world. Every adult should have independence and not depend on others

24/7. Neither will be possible without developing a treatment.

Completing the Natural History Project will provide essential data to advance clinical trials.

Successful clinical trials could lead to treatments that significantly improve the quality of life for those affected by MCHS.

A Personal Note: Before starting this training, I hadn't run for over a decade. But in the past few months, I've taken up running again to raise awareness, support and critical funds. The process of approving a treatment is long, so we really need YOUR HELP to supercharge our Natural History Project and finish it in 2 years. This way, we can aim to get the kids a treatment in 5 years: 2 years for the Natural History Project, 2 years for clinical trials, and 1 year for regulatory approval.

We can make an impact here. Many conditions have no treatment options, but for MEF2C Haploinsufficiency Syndrome, a treatment is within reach if we can get the funding. Every day without treatment might be the difference between these kids being able to gain independence or not. It is urgent to get them treatment as fast as possible. #Strive4Five #MEF2C #MCHS

How You Can Help:

Donate: Every contribution, no matter the size, brings us closer to our goal.

Share: Help me share this event to reach every corner of the world. A small donation by many can change the futures of Elijah and all those special MEF2C warriors. ‍

Follow: Join the @mef2cfoundation on social media to be part of our journey and stay updated.

Support: Cheer me on as I take on the Leeds Half Marathon and follow my training journey. ‍

Your support means the world to me and Elijah. Together, we can make a difference and bring hope to those who need it most.

Thank you for your generosity and kindness.

Lorena