Jenny’s disease (CMT 1A) is an inherited neurological disorder that affects the peripheral nerves that transmit signals to your feet, legs, hands, and arms. CMT is usually inherited and is degenerative, so it gets worse over time.

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.

Because of the early effects of CMT (delayed reflexes, lack of feeling, inability to step flat or even walk) Jenny was misdiagnosed with cerebral palsy. Some doctors thought she might never walk. But her life changed after having pro bono surgery at the Shriners Hospital in St. Louis, MO. where they did procedures on her Achilles tendons and lower legs to give Jenny the gift of walking. But she had yet to be correctly diagnosed.

“After my surgery I had casts and then braces and PT. I joked about having ‘Forest Gump’ braces,” says Jenny. “But I learned to walk without aids, although I always was clumsier than other kids. I experienced hand tremors. Tripping and falling was also a regular part of my life. School physicals to play sports raised concerns that led to MRI’s and scans to rule out brain tumors. To no avail, and with no real answer to my ailments, I just went on about life with what seemed like ‘normal’ to me.

“It wasn’t until I was 19 and in college that my mom (who also suffered from similar systems) saw a podiatrist who asked her if she had Charcot-Marie-Tooth disease. When she asked what that was, and he described it, she knew this is what we both had. She literally called me and said “I think I just found out what is wrong with us.

“I then had my first appointment with a neurologist for a nerve conduction study and EMG. The result was an immediate diagnosis of CMT Type 1A and for the first time in my life my issues had a name.”

Because the disease is progressive, her problems will get worse so Jenny is in a race against her CMT. “At some point, I will no longer be able to control my extremities and unfortunately will be completely disabled in a wheelchair. Before this disease steals my body, I want to make a positive impact on our communities and inspire those with any ailment to ‘go for it’, whatever ‘IT’ is. To inspire the world that you can truly do anything you put your mind to.”

“It’s just a lap, no big deal. That’s part of the mental thing for me. One day I am going to be physically dependent on others,” she says. “I know that it’s coming. I see what happened to my mother and her quality of life and pain. I mean it’s bad. It is one of the biggest reasons I do these challenges and live my life to the fullest. I’m doing it now so when I am sitting around in a wheelchair, I can tell some really good stories.

“My solo circumnavigation with my disability is my attempt to hopefully awe, inspire, and educate as many people as I can in this world by sharing an experience that so few have accomplished. My physical and mentally demanding trip is not only for personal growth, but more importantly to truly inspire, bring curiosity out of adventurous souls, help individuals summon inner strength, and continue to educate those I am taking around the world with me about our oceans, the strength of the human spirit and Charcot-Marie-Tooth disease.”

As a trauma ICU nurse for 17 years, Jenny is often the only medical professional in the remote areas where she anchors. So, she has volunteered her time and nursing skills resolving multiple medical emergencies. “I want to continue to provide medical aid where needed throughout my sailing. I am currently working on stocking my vessel with more medical supplies and an AED (automatic external defibrillator) to be able to supply lifesaving medical care along my journey.”

She has all her medication as well as medicine for her first mate, a 6-pound Maltese Yorkie named Romeo. “I do have medicine on board if God forbid, I have to put him down at sea,” she said. “You have to be prepared for everything.”

As she sails around the world, Jenny is excited to spend time in several locations. She is looking forward to spending time in Vanuatu, an archipelago in the Pacific Ocean near Fiji, and Madagascar, an island country lying off the southeastern coast of Africa.