Updates:

We have reached our goal for the personalized study for Cooper's variant! YAY! We cannot thank each and everyone of you enough.

Let's keep going and raise funds to go towards The MED13L Community 2025 Family and Research Conference, where we can bring our families together to build community, raise awareness, and accelerate research.

Hope as STRONG as the Race is LONG

On December 8th, Jake will participate in the IRONMAN 70.3 Indian Wells-La Quinta to raise funds in honor of Cooper.

Our Purpose:

Since Cooper was an infant, he has been our sweet little mystery. He has been delayed in all of his milestones and had an array of medical needs far beyond that of a typical developing child. Over the last 4 years, we have spent hours searching for answers and seen a countless number of doctors, specialists, and therapists. We recently found our answer through genetic testing, where Cooper was diagnosed with MED13L disorder. This is an extremely rare condition, with only around 100 cases reported in the medical literature.

Our Cause:

MED13L Syndrome is a rare neuro-developmental disorder that has profound implications on the development and health of children. The MED13L Foundation is collaborating with other similar disorders, pooling resources and knowledge to drive impactful research and accelerate the development of treatments that can benefit countless children in need.

Our Goal:

We have a unique opportunity right now to fund research that would look at specific treatments for Cooper’s variant of his condition. To support this groundbreaking research, we are launching this fundraising campaign aimed at the discovery of treatment options for MED13L. Your contribution can directly support the development of life-changing treatments for Cooper and more individuals affected by this rare disorder, which currently has limited options for diagnosis, management, and care.

Why your participation matters:

By contributing to this research, you’re not only investing in scientific innovation, but also providing hope to individuals and families who face this disorder every day. Securing major funding is a challenge, so we rely on fundraisers like this one. Your support fuels life-changing research.

Please join us on this journey, by donating and helping us bring transformative treatments closer to reality. Every donation makes a difference, no matter the size.

Together, we can create a brighter future for our Cooper and many children with rare diseases.

Because hope IS as STRONG as the race is long!

Hope as STRONG as the Race is LONG

By MED13L

Hope as STRONG as the Race is LONG