14 years without answers
After 14 years of unanswered questions, Zach was diagnosed with a rare progressive neuromuscular disease, Charcot-Marie-Tooth Type 6 and mitochondrial disease C12orf65/MTRFR. His symptoms are progressive and range from vision loss due to optic atrophy to a burning sensation in his hands and feet, loss of balance, muscle wasting, and difficulty grasping.
A full life
Zach enjoys riding horses and attends weekly lessons at a therapeutic riding center. He belongs to the YMCA where he swims, works out at physical therapy to stay strong, and gets regular massages to help with the pain throughout his body. He is an alumni Victor Blue Devil and helps coach the varsity football team each year. He loves life and enjoys being with family and friends, and watching the Buffalo Bills, NASCAR, and hockey.
Not alone anymore
We once thought Zach was the only person in the world with this disease.
Over time we have found others, especially younger children around the world, who have the same mitochondrial disease. It has been a long journey, but we are determined to assemble the right team of scientists and clinicians to accelerate treatments for C12orf65/MTRFR.
