MCT8-AHDS Foundation

If you're here, you probably know by now that I'm a mama on a mission - a mission to train for and run my first marathon in more than six years and support the MCT8-AHDS Foundation in the process. Why? It's simple. For this guy and the ~350 kiddos just like him around the world.

In 2019, Colton was diagnosed with an extremely rare genetic disorder called MCT8 Deficiency Syndrome, also known as Allan Herndon Dudley Syndrome (MCT8-AHDS for short). It took us more than a year and countless rounds of testing to finally learn what was "wrong" with our little boy. Our geneticist showed us a page in a book (that was full of inaccurate, outdated information). She told us there was no cure and that getting access to the only "treatment" was impossible because it's not legal in the U.S. She then sent us on our way with nothing more than a bleak prognosis and a "good luck" pat on the back. We pretty much never heard from her again.

With only about 350 documented cases in the world, this experience isn't uncommon. Most doctors and researchers have never heard of MCT8 and and they have no idea where to send families for further treatment or support.

But you know what? It doesn't have to be this way! With your help, we can reach more families and medical professionals to ensure they know what resources are available. With more awareness comes more interest in and funding for research toward earlier diagnosis, better treatments, and maybe even a cure. We can offer more support within our community for the much-needed things insurance companies hate to pay for, like therapy and equipment. And we can provide more support during the hard times that, unfortunately, come all too often in our world, helping to pay for meals during hospital stays, grief counseling, and funeral expenses.

I've said from the very beginning that Colton was meant for big things. He's already helped clear a path for other families in the U.S. to access treatment legally (which has to be imported from Sweden) - something that has never been possible before! We learned early on to never underestimate what he can do, and he's just getting started.

Yes, I'm the one running the marathon, but I promise you he's with me every literal step of the way. Please help support our mission and give this guy another big accomplishment to add to his resume :)