On September 9th, The Rochester Chrome Divas hosted a Scavenger Hunt to raise money for CMT6 research.
HNF had the opportunity to connect with Kathleen Bogart, PhD, the Principal Investigator of the Adults with Rare Disorders Support Study in partnership with the National Organization for Rare Disorders
Scavenger hunt September 9th, 2017
When Debi’s son Zach was first diagnosed with CMT Type 6 in 2014, after 14 years of doctors trying to figure it out, she couldn’t believe there was a disease out there that no one has ever heard of.
On Thursday April 21, 2016, over 160 Zach supporters gathered for the 1st Casino Night to benefit CMT6!
The Hereditary Neuropathy Foundation is proud to be included among leading rare disease groups, as we collectively aim to fill the research gaps to better understand how these rare diseases progress over time.
On October 23, 2015 the Victor New York Blue Devils Football boosters and coaching staff dedicated their first playoff game from their undefeated season to team manager Zach Houliares.
On Saturday July 25, 2015, Debi and Tom Houliares hosted the first annual Chrome Diva’s Motorcycle Scavenger Hunt in Webster, New York to raise awareness and funds for CMT Type 6.
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.
Throughout my life many different people have impacted my views on certain things, whether it be how I speak, how I dress, what I eat or even who I’m friends with. I now consider my viewpoint on life much more mature and sophisticated than it was 10 years ago or even 5 years ago. I think more logically than ever before and I am much wiser now because of my mistakes and because of my success. Recently in my life I met another person who greatly impacted my life.