This Charcot-Marie-Tooth Disease Patient is Circumnavigating the Globe Solo

Jenny Decker began her solo voyage in her 1983 Bristol 35.5 Tiama from Honokōhau, Hawaii on June 28, 2023 (see Patient Worthy articles Part 1 and Part 2.)

Jenny hopes to spread awareness of her neurodegenerative disorder, Charcot-Marie-Tooth disease. Her voyage is a race against time or more correctly a race against disease progression.

Jenny’s goal is to be the first person with CMT to sail around the world. That is her primary goal. Jenny believes in it and thus far has proven her tenacity.

About the Challenge Grant

In February Jenny was awarded a Challenge Grant by the Ocean Cruising Club (OCC) for her voyage that she has named “Just a Lap”.

The OCC announced that the Grant will support a portion of the costs of Jenny’s voyage including the purchase of critically needed equipment. OCC announced that this is the tenth grant given by the organization since 2019.
The list of OCC beneficiaries includes maritime research projects centered on the environment, solo circumnavigations, and other challenging projects.

OCC announced that it is pleased to support Jenny’s circumnavigation. Jenny reciprocated by thanking the organization and expressing her gratitude for OCC’s assistance and its commitment to her journey. She said that she is looking forward to “taking the OCC around the world” with her.

Jenny is currently in Vuda, Fiji to sitt out the cyclone season. She plans to continue in May to Vanuatu, the Solomon Islands, Papua New Guinea, and the Indian Ocean.

About Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth disease is named in recognition of the three doctors who were the first to recognize the disease.

CMT is defined as being an inherited nerve defect causing abnormalities in sensory and motor nerves. The motor nerves carry the signals from the brain to muscles in your legs, hands, feet, and arms. The long-term effects of CMT vary widely, from being slightly affected to requiring a cane or perhaps needing a wheelchair.

Jenny acknowledges that currently there is no cure. She describes her physical well-being as having an internal stopwatch whereby she will eventually lose her physical independence.

Meanwhile, Jenny insists, and has proven, that if a person sets a sincere goal, he or she can do almost anything. She wants to be a role model in this regard and in some way, she hopes her trip will generate more research and eventually help a younger generation find a cure for CMT.

Jenny says that she believes a person’s mind is stronger than their body and as time goes on, she will continue to call for that strength.

“Just a Lap” can be followed on Instagram, Facebook and Tik Tok. Her journey can be supported in various ways through social media.

Patient Worthy will continue to follow Jenny’s voyage.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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