The Houliares Family Takes on CMT6

We have two choices in this world. We can sit back and do nothing, allowing this disease to happen, or we can go out and fight to make a difference.

When Zach was first diagnosed with CMT6 after 14 years of doctors trying to figure it out, we were fighting mad that there was a disease out there that no one has ever heard of. How can this be? After researching on the internet, which didn’t provide a lot of information, my first call was to the HNF, and I spoke with Allison Moore. She was the very first person that was able to answer so many questions about CMT that all the doctors could not.

Zach’s form of CMT is different, though. He is legally blind, with a vision of 20/400. With a rare form of a rare disease, our new mission in life became raising awareness and money for research for Zach and others like him. There could be many other people who are not even diagnosed because doctors are not aware of what CMT6 is. So we are taking matters into our own hands and spreading the word.

Zach loves to play sports but can’t physically play on any school teams due to his blindness and difficulty walking. But one week after this diagnosis, Zach was unexpectedly sent onto the basketball court in a game with a minute left. Unscripted and unrehearsed, his teammate threw him the ball and swish, all net. There wasn’t a dry eye in the house. The video played on the local news and even ESPN.

That was only the beginning. We started raising awareness in Zach’s schools by selling ”Find a Cure for CMT” bracelets. Most local business where we live in Victor, NY have a jean day where if employees pay $1, they can wear jeans to work with proceeds going to HNF “Team Zach.” Within 10 months of Zach’s diagnosis we had a successful fundraising event at my husband’s workplace and raised quite a bit of money. We already have a motorcycle/vehicle scavenger hunt event planned for July of this year and a second event is in the works. People are willing to support a good cause, and it’s our job to make these events happen, no matter how big or small. Everyone sees and know the symbols like the pink ribbons for breast cancer, puzzle piece for autism. Inherited neuropathies are just as big and as powerful. Fighting to raise awareness for CMT has to start somewhere, so why can’t it start with us. Never give up hope. Learn more about Zach’s Team.