Zach's Journey

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. Both of these diseases have no treatments or cure. Zach’s symptoms are progressive and range from vision loss due to optic atrophy, burning sensation in hands and feet, loss of balance, muscle wasting, difficulty grasping, and more.We once thought that Zach was the only person in the world to suffer from this disease. Overtime, we have found several people, 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 world class clinicians to work together to accelerate multiple therapy approaches to help treat C12orf65/MTRFR.
Head over to Zachsteam.org for more information on Zach and his journey with this rare, progressive disease.