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About The TBCD Foundation

The TBCD Foundation is a community-led project to build community support for affected children and their families, increase awareness of TBCD disorder, promote medical literacy surrounding TBCD, and pursue safe and effective treatments for TBCD disorder. We want to help people learn about this rare genetic disorder so that children with TBCD gene mutations can get the help they need and deserve.

Our Story

Hi, I'm Helena McCabe, the founder of The TBCD Foundation. When my son Maxwell was diagnosed, I immediately began to search for resources to learn about my son's condition and to look for other affected families. I found very little. Only a handful of peer reviewed articles existed, and they were scattered around the internet like a scientific scavenger hunt. Medical professionals we saw knew nothing about TBCD disorder, and there was little information for them to learn with.

Everyone kept telling us the same thing: TBCD disorder is too rare to cure.

Thankfully, I found a few other determined families whose children were affected, and we began to work together to share what progress we had made. The exchange of the ground we had each already covered rocketed our progress forward. I realized that an open project community with a living database of everything we know about TBCD disorder could accelerate our progress and connect us, clinical researchers, and other medical professionals to each other to improve outcomes for everyone.

Our mission is to raise awareness about TBCD disorder, build and strengthen relationships within the TBCD community, lower the barrier to entry for medical professionals looking to learn about TBCD disorder, and (most importantly) to support the development of real medical solutions for our children.

Core Values

The TBCD Foundation holds its core values sacred; they are inviolable to everything that we do. 

Children's Rights: The TBCD Foundation is an act of love for our children. No matter how complex their medical needs or what their individual physical or cognitive function is, our children will be spoken to and about with respect. Their well-being will remain at the forefront of everything that we do.

Community Support: The TBCD Foundation is for and by the TBCD disorder community. We are supportive of all TBCD disorder families, initiatives, and foundations, and will actively seek to support and further them however we can.

Responsible Spending: We are fully donation-funded and volunteer based. We have no paid staff, and all funding goes directly toward research funding for TBCD disorder.