CMT4B3 Research Foundation Information

Hunters CMT4B3 Research Foundation, a non-profit 501(c)3 public charity, was founded to fund, support and advance research including the development and production of therapeutic treatments for Charcot-Marie-Tooth Disease Type 4B3 (CMT4B3) and other related inherited neuromuscular disorders. The mission of the foundation is to improve public awareness of CMT, advance education, develop gene therapies, novel drug discovery and drug repurposing treatments, as well as implement a patient registry for CMT4B3 to improve the quality of life of those suffering from this disorder. In May 2020, three year old Hunter Schultz was diagnosed with an ultra-rare genetic disorder called CMT4B3. There is no cure or treatment for this degenerative neuromuscular disorder. Hunter's parents, Iris and Brett, quickly realized the incredible challenges they faced.They learned that a coding error in one single gene, known as SBF1, would cause an important protein to become nonfunctional and the protective coating around Hunter’s nerves would decompose. His brain and his spinal cord would no longer be able to communicate with his distal muscles and he would suffer progressive paralysis. They knew they would have to do everything possible to find a treatment and when possible was no longer an option, they would do the impossible by paving their own path to a cure through scientific research. Iris and Brett found hope in new genetic therapies which were helping children with "rare" diseases. At this time, Hunter is only one of fifteen known patients worldwide. Diseases this rare are not on the radar of big labs or pharmaceutical companies. Funding for research is virtually nonexistent. The world was not set up to save Hunter. So Brett and Iris will set out to change the world.