My neighbor and friend is Robin Schultz. In May of 2020, her grandson Hunter was diagnosed with Charcot-Marie-Tooth Disease (CMT4B3). Her family has started a 501(c)(3) non-profit to save children with this rare-life threatening degenerative neuromuscular disease. Please visit her website to learn more:www.cmt4b3research
Please support the research at University of Miami Miller School of Medicine to find a treatment for children suffering from CMT4B3. We hope we can count on you to help us find a cure for children with CMT4B3 and related neuromuscular diseases.
Many of our neighbors know Hunter, and see him dashing around in his orthotics.Children with CMT4B3 lose the ability to walk, the use of their hands and potentially their sight and/or hearing. Eventually the disease can compromise their breathing, leading to premature death.There is no cure or treatment for CMT4B3 or any form of CMT.
CMT is similar to Muscular Dystrophy and ALS. Untreated, CMT causes the nerves to deteriorate, which breaks down the communication between the brain and the muscles leading to muscle weakness, wasting, limb deformities and paralysis.
In less than 2 years, the Schultz’s have: launched a non-profit, hosted an International CMT4B3 Research Symposium, assembled a renowned Scientific Advisory Board, became a patient resource for the Peripheral Nerve Society, initiated 11 CMT4B3 Research Projects (8 of which we are solely funding), and raised over $1,000,000 funding universities worldwide.
The University of Miami Hussman Institute for Genomics is taking a leading role in their research efforts. They have granted the University of Miami over $340,000.00 for phase 1 of their CMT4B3 Research.These projects aim to develop a gene therapy and small molecule drug to stop the progression of the disease.
Their research efforts are highlighted in the current issue of The University of Miami Miller School Medicine Magazine, “DNA Detectives, a family’s journey to cure a rare genetic disorder.” To learn more please click here:www.cmt4b3research.org/funduofm
If you have any suggestions for us to spread awareness or fundraise for U of M research, please feel free to email or call: firstname.lastname@example.org
The CMT4B3 Research Foundation is composed of volunteers, we work from home and all operational costs are covered by the co-founders, therefore 100% of donations go towards research.
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Robin Schultz, Chief Operating Officer
Hunters CMT4B3 Research Foundation Inc
77 Garden Road, Scarsdale, New York 10583
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Thank you very much