On Monday, May 20th, Hunters CMT4B3 Research Foundation will be hosting our 2nd Annual "PLAY FORE A CURE" Golf Tournament at the Metropolis Country Club in White Plains, N.Y., to fund research for life-saving treatments for children suffering from Charcot-Marie-Tooth disease, a rare form of muscular dystrophy.
Why are we so passionate: In May of 2020, six year old Hunter, was diagnosed with CMT4B3. The Doctors told us there was no cure or treatment. They told us to go home, love him and come back in a year to monitor the progression of the disease. Untreated, CMT causes the nerves to deteriorate leading to muscle weakness, limb deformities and paralysis. Children with CMT4B3 lose the ability to walk, use of their hands and potentially their sight and/or hearing. Eventually the disease can compromise the patient's breathing, which can lead to premature death.
