Our son, Keenan, was diagnosed with Charcot Marie Tooth Disease, Type 4C (CMT 4C), in 2023, when he was 15 years old. CMT 4C is a progressive demyelinating neurological disease affecting the peripheral nerves. It causes progressively worsening sensation and muscle strength mainly in the feet, lower legs and hands. It can also cause a whole host of other symptoms such as scoliosis, joint dislocations, generalized joint and muscle pain, balance issues, hearing loss, and gait differences often requiring braces or walking devices. For Keenan, it has meant many many doctors appointments over the years, multiple annual MRI's, surgeries, weekly physical therapy, and ongoing medical tests. He has every specialist under the sun! It has also meant missed opportunities such as end of school year camps, and field trips. He has spent two full summers recovering from major knee surgery related to this disease.

Despite the ongoing challenges caused by CMT, Keenan is a thriving junior in high school and is planning on studying physics in college! He enjoys learning, especially physics and computer programming, pushes himself physically, loves hanging out with friends and family and is always finding new interesting hobbies. Lately he has been building watches from scratch! We are so very proud of him.

The most promising research for CMT 4C is to eventually have a gene therapy cure available to every patient. This could potentially cure the disease and stop the progression! We have been fortunate to have a very wonderful and motivated family join the efforts in finding a cure for this disease as they also have a teenage son with CMT 4C. Big shout out to The Paulsen Family. With their incredible work, we now have an actual project in place to bring the first handful of CMT 4C patients through gene therapy for this disease! PROJECT FORESEE is a collaboration with the amazing Charcot Marie Tooth Association and two leading doctors, Dr. Steven Gray at UT Southwestern and Dr. Kleopas Kleopa at The Cypress Institute of Neurology and Genetics.

Project Foresee raised 650K in 2024. We are hoping to do the same in 2025 which will fund the toxicology study. After that we are clear to start clinical trials and treat the first 8-10 CMT 4C patients. If you are able to contribute in 2025, it would truly mean the world to us. It could impact the lives of many with this disease and could mean the the difference of Keenan walking independently his whole life!

Please let us know if you would like more information about PROJECT FORESEE!

Here's a video we created for the recent Foresee Gala; https://vimeo.com/1088793090?share=copy#t=0