Editor’s Note: This story is a continuation of Jenny Decker’s global sailing voyage. To see the original article, please click here.

Many of our Patient Worthy readers are aware that Jenny Decker, a Charcot-Marie-Tooth patient, is nearing her goal to circumnavigate the globe solo, despite her incurable and progressive disorder.

Jenny’s mother was diagnosed with CMT and is now wheelchair-bound. In June of 2023, Jenny Decker, a 40-year-old trauma nurse, set sail on her voyage aboard her 1984 35.5C Bristol that she named Tiama.

A Look Back at Jenny’s Challenges

Jenny has had several challenges, such as Tiama being dismasted or being in the path of a waterspout. Yet, these and other more severe mishaps have not dulled her adventurous spirit.

Jenny is looking forward to visiting Vanuatu which is near Fiji and also Madagascar just off the southeastern coast of Africa. She has retrofitted the boat to accommodate her disability. She has also made other changes to help her remain independent.

It is estimated that approximately 126,000 individuals are living with the disease in the U.S. while about 2.6 million people worldwide have CMT. Jenny’s goal is to see her efforts bring awareness and increased research efforts to end the devastation caused by CMT.

There is no cure, but Jenny hopes her effort will change that picture and bring awareness to the CMT disease.