As many of you know, Lennon Jase was diagnosed with CMT4C (Charcot-Marie-Tooth Disease Type 4 Subtype C) a rare progressive neurological disease that affects the peripheral nerves controlling the muscles, during the pandemic after dealing with various symptoms since birth.

It was a devastating diagnosis and one that was so hard to wrap our heads and hearts around after seeing so much improvement to having a sudden onset of progression with falling, balance and coordination issues and then learning that this disease will continue to progress affecting the use of his legs, feet and hands, among other possible affects like breathing, eye sight, etc.

While we take this a day at a time and try our best to stay positive and supporting Lennon in every possible way we can and in all he proves he can do, our goal is to work towards a treatment that will slow or stop the progression of his CMT and eventually a cure to help Lennon and the entire CMT4C community.

It is well understood exactly which gene causes the destructive effects of CMT4C (SH3TC2), and there is even a promising therapy that has been shown to repair this faulty gene in mice. However, we are still missing an essential piece: a rigorous, clinical-focused natural history study to show how the disease progresses without treatment, and that confirms the best way to measure this disease progression over time. Without this, there is no way to run a trial for any sort of therapy because there would be no documented "natural progression" to compare it with.

We have identified exactly the right researchers to do this study - they have completed similar studies in other types of CMT that yielded exactly the result we would need. They are willing to put together the plan and execute the study - but it needs to be funded. Thats why I am partnering with the CMTA to raise funds for this critical next step in CMT4C research. To complete the caliber of study that we need will be expensive, so I am partnering with other patients from the CMT 4C community so we can aim high. Please help us get this done! It feels good to know we are working toward this specific goal and the goal is one that I have prayed for, but we know we can't get it done without the support of family, friends, and our community. I am so grateful to you for helping Lennon Jase and the CMT4C community!