by Regan Huizenga

As she walked with her family to go watch fireworks, Verene Huizenga’s brother-in-law noticed something odd about the way she was walking. As they approached the blankets where they would be sitting for the show, he asked her if he could examine her feet. He was an orthopedic surgeon and had noticed that Verene was lifting her leg up while she walked, so as not to trip on her drop foot. After a quick examination, he was nearly certain that Verene had Charcot-Marie-Tooth disease like several other members of her extended family. 

When Verene realized that she had CMT, she was 35 years old. Three of her uncles and five of her cousins also had it, so she already knew that she would have to learn to adapt to the gradual atrophying of her muscles. At the time, however, she hadn’t started to notice any symptoms. 

Verene said, “Initially, I had mild dropping of my feet and needed to bend my knees and lift my legs so I would not trip on my toes, although I was not even aware I was doing that.”

Verene’s atrophy advanced, though, and soon she wasn’t simply lifting her feet as she walked; she was wearing flexible ankle foot orthoses and struggling to move across grass and other uneven surfaces, climb stairs, get out of chairs, and carry items. 

During this progression, Verene transitioned from flexible ankle foot orthoses to semi-rigid and then rigid ones, which complicated the task of pulling on a pair of shoes. She also transitioned from foot pedals to hand controls in her car, as she can no longer safely move her foot between the accelerator and brake.

Verene said, “With each new challenge encountered so far, I have thankfully found a way to adapt so that I can still enjoy a productive life.”

And her family has been a significant part of this productive life. Verene is both a mother and a grandmother, but she makes certain that CMT does not prevent her from spending time with her family. She sat on a rollator on the sidelines of her son’s soccer and baseball games when she couldn’t climb up the bleachers, and she uses a walker so she can play outside with her granddaughters. When she visits a family member’s or friend’s house, she needs to make certain that there are handrails to help her with the steps into the house. Many of them have installed ramps and handrails to make transportation easier for her as well. 

Verene said, “All of my family and friends have been very supportive. They allow me to do things that I am still able to do and offer to help when they see me struggling.” 

Not only do Verene’s family members support her through these struggles, but many of them also understand them. Verene has two brothers, one daughter, three uncles, five cousins, four nieces and nephews, and two great-nephews that all have CMT 1J too.

In 2022, about 30 of Verene’s relatives were genetically tested by researchers from the University of Miami; these researchers believed that they had discovered the genetic marker for the CMT 1J. They were correct, and the testing confirmed that Verene and many of her family members had this specific type of CMT. Since the identification of this genetic marker, Verene has grown hopeful about a treatment for CMT 1J. 

She said, “Perhaps the treatment found may not be able to reverse my atrophied muscles, but it would be so wonderful if individuals, particularly children, newly diagnosed with CMT 1J would not have their lives so adversely impacted by it.” 

Having her family by her side as she learns more about CMT 1J and experiences the progression of her muscle atrophy has been valuable for Verene. 

She said, “My daughter, cousin, and niece, who have CMT 1J, are already needing the use of a wheelchair and their positive attitudes are a huge inspiration for me to have a positive attitude, not feel sorry for myself, and be thankful for what I am able to do.”

Although some of the things that she was once able to do have grown difficult due to the muscle atrophy in her hands, Verene still enjoys various activities. Things such as sewing and writing have become challenging, however she spends time substitute teaching at the middle school where she used to teach, gardening in the summer, reading, playing board games, taking road trips, and going out to eat with friends and family.

While CMT 1J still has its negative impacts, she hopes that these will be mitigated in the future.



Verene said, “Now that the genetic marker has been identified, the funding for continuing research at Jackson Laboratories has become so very important so that most importantly a treatment can be found and then CMT 1J will no longer have such a huge negative impact on the lives of those who have this genetic variant.”