When Ashlyn Montisanti ‘26 wakes up each day, she doesn’t know if it is going to be a good CMT day or a bad one. CMT stands for Charcot-Marie-Tooth, a progressive neuromuscular disease with no cure. Montisanti was diagnosed in 2020 at age 15. And while it is unknown how severely her symptoms will impact her, what is known is the impact she can have spreading awareness about CMT.
“I hope my speaking out about my personal experience with CMT will serve as a message to other disabled students to come forward with their experiences to the community,” said Montisanti, a business major.
CMT affects more than 3 million people worldwide and is the most commonly inherited peripheral neuropathy disease. CMT is progressive, causing a loss of normal function and sensation in a person’s legs, feet, arms and hands. It produces a wide range of symptoms with varying degrees of severity, from muscle pain to chronic fatigue to hand tremors.
For Montisanti, the disease is a bit more “hidden” even though symptoms create daily challenges for her.
“Many days there are no obvious signs of my struggle with CMT, but simple tasks such as tying a shoe, opening a water bottle or using the stairs can be problematic,” she said. “On more challenging days, I may have difficulty walking in a straight line or standing in one spot without losing my balance. My legs and ankles get tired and weak very easily, and this makes it hard for me to walk long distances.”
Her hope is to raise awareness of CMT within the Merrimack community and help people understand that those with debilitating diseases may struggle with conditions that are not obvious at a glance.
Montisanti already has extensive advocacy work that she is bringing to Merrimack, including working as a technology and digital marketing support intern at Charcot-Marie-Tooth Association. She also volunteers as a member of the social media committee on the Youth Council of CMTA, helping to create a place where younger people with CMT are able to connect with each other and provide support, understanding, encouragement and inspiration. Over the past two years Montisanti has raised about $4,000 for CMT.
For more information on CMT, visit www.cmtausa.org.