Sailing “Just a Lap” Around the World for Charcot-Marie-Tooth Disease

Jenny Decker is attempting to enter the Guinness Book of World Records as the first person to sail around the world solo with Charcot-Marie-Tooth disease (CMT). The 40-year-old is sailing to create awareness of the disease and encourage people to support the “groundbreaking” research being done by the CMT Research Foundation. She has named her journey Just a Lap.

“Only a few hundred people have solo-sailed around the world and I will be the first to do so with CMT. More people have been to space,” Jenny writes about her reasons for casting off. “It’s such a rare feat it seemed perfect for a rare yet special disease. Most people have never even heard of Charcot-Marie-Tooth disease, so how are we even supposed to raise money for research toward a cure?”

The idea of Just a Lap began after Jenny became the first known solo person to circumnavigate the Big Island of Hawaii by kayak. “After that beautiful and terrifying adventure I wanted to raise the bar to truly inspire those with this disease, or any disability, that despite your physical attributes, you can do anything you put your mind to,” she adds.

In 2017, she began sailing with friends in Hawaii. At one point, while standing in a boatyard looking at all the sailboats on their stands, Jenny stated, “I am going to sail around the world and start by 2020.” She became “a student of the ocean, boats, and weather.” She joined sailing clubs, crewed on boats, became a divemaster, did commercial fishing in Alaska, joined a canoe club doing ocean passages between the Hawaiian islands, and even entered open-ocean swimming competitions.

Of course 2020 had other plans, and the start of Jenny’s round-the-world voyage was delayed, but she is now underway and in early July had arrived in Vanuatu. She expects her “lap” to take three years, visiting almost 30 countries along the way.

Jenny is singlehanding a 1984 Bristol 35.5c, Tiama, with “quaint amenities,” including a fridge/freezer and gimbaled stove. She set off with three months’ worth of food, a desalinator, and medical supplies that would make a hospital proud “with sutures to IV bags and start kits.” She’s also carrying medicine and supplies for her first mate, “a six-pound Maltese Yorkie named Romeo.”

“I want to be a face for CMT disease that makes people understand, know, and want to be a part in finding a cure to help those behind me,” she says. “Just a Lap is to bring hope to everyone suffering from chronic pain and loss of their independence, that our hearts and minds are stronger than any physical attribute we may have.”

CMT is a neurological disorder that affects the peripheral nerves that transmit signals to your feet, legs, hands, and arms. The disease is usually inherited and is degenerative, so it gets worse over time. It 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.

You can follow Jenny’s voyage on social media: Facebook / Instagram / TikTok

Learn more about and Charcot-Marie-Tooth disease and support the research at https://cmtrf.org/.