Jenny Decker, a 40-year-old nurse living with Charcot-Marie-Tooth disease (CMT), a rare neurological disease with no known cure, is attempting to become the first person living with CMT to sail solo around the world.

The trip, called “Just A Lap”, will take about three years and, if successful, will mean Jenny is recognised for the feat in the Guinness Book of World Records.

Jenny’s voyage began in Hawaii on 28 June 2023 and she has already travelled alone more than 3,200 miles through the Pacific Ocean.

She is currently moored in Vuda, Fiji, for the cyclone season, where she is repairing her sailboat “Tiama”, gathering supplies—including medical supplies so she can supply lifesaving medical care in the remote areas where she anchors—and raising awareness of CMT.

Jenny has needed to retrofit “Tiama” with special equipment and other hardware to accommodate the physical challenges brought by CMT. The condition interrupts nerve conduction, so Jenny’s hands don’t listen well to her brain. Simple things, like buttoning a pair of trousers or opening a bag of crisps, become difficult—and the more she concentrates, the worse her hands tremble.

Not only that, but her legs don’t listen well either, often affecting her balance or completely failing her. The problems she has with unsteadiness on land are worsened at sea on a rocking boat, and she has to strap herself in and wear a harness to stop herself from going overboard.

“Grabbing lines and reeling things are difficult for me, so I crawl a lot on the boat,” she explains. “I have to hold on to everything. My brain is sending signals to my arms and legs but they really don’t want to listen, and fine motor skills are very difficult.”

Jenny knows all too well the toll that CMT can take on those affected, through seeing how it has deeply affected her mother.

“No one knows about CMT and how devastating it can be, especially as you age.”

Jenny’s goal is to raise awareness of CMT and help raise funds for The CMT Research Foundation, with whom she has partnered.

“I want to continue inspiring those with this ailment, or any disability for that matter,” Jenny has written. “I truly believe you can do anything you put your mind to. So, this journey is to inspire all individuals to challenge themselves, set goals, go for them, and share all triumphs or heartaches… It is what makes us feel the most alive as humans and connects us.”

Of her partnership with the CMT Research Foundation (CMTRF), she says: “The CMTRF has built an extraordinary record of success in funding the right kinds of research projects to find treatments or a cure for all types of CMT.”

To date, CMTRF has funded 21 projects, of which 6 are completed.  Of those six completed projects, five have clinical candidates. In 2023, DTx Pharma, with a CMTRF-backed programme as its lead candidate, was acquired by Novartis for $1 billion.

Cleary Simpson, chief executive officer of CMTRF, describes Jenny’s efforts as an “inspiration to the entire CMT community”.

“In spite of CMT-related problems with her grip, balance and agility, Jenny is attempting something that few folks in perfect health would attempt,” she says. She “shows us all what ‘unstoppable’ can really mean,” she adds.

“We will be cheering for her continued success by tracking her progress on ourwebsite … and updating her story as she moves across the seas. You go, Jenny!”

Charcot-Marie-Tooth encompasses a group of inherited, chronic peripheral neuropathies that result in nerve degradation. People living with CMT experience progressive muscle atrophy of legs and arms, causing walking, running and balance problems, as well as abnormal functioning of hands and feet. CMT affects one in 2,500 people (about the same prevalence as cystic fibrosis), including 150,000 Americans and nearly 3 million people worldwide. At the moment, there is no treatment or cure for CMT.

Source: CMTRF

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