Charcot-Marie-Tooth disease is a rare, little-known disease, and New Lenox resident Doreen Pomykala wants to put an end to it.
CMT is an inheritable, progressive neuromuscular malady that affects more than 135,000 people in the U.S., including an estimated 2,900 in the Chicago metro area and 5,100 across Illinois. It causes muscle weakness, impaired balance, difficulty walking, and nerve degeneration. Many people suffer years before receiving an accurate diagnosis or proper medical care.
Doreen lives with it every day.
On August 22, Doreen will lead the Chicago Walk 4 CMT that will begin at 10 a.m. at Hickory Creek Preserve in Mokena and she is inviting all of Chicago and suburbia to join her.
A similar event will take place on Saturday, September 5, at 10 a.m. at the Lake County Fairgrounds, 889 S Court St., Crown Point, Indiana.
“I started attending the walks probably 20 years ago,” Doreen said.
“Over time, I started helping out with walks. I became a Branch Leader in 2017 and started leading the Walks in 2018. I love the community, connection, and friends that come from these walks. I love meeting new people who have CMT and being able to share hope and resources with them. There’s something so special about being with other people who go through similar struggles as you do.
“Quite often a walk is the first time a person with CMT meets other people who have CMT,” she said. “It helps them not feel so alone.
“For many people this is an invisible disease to others. For many years a person with CMT can appear healthy and normal, but they are actually experiencing a lot of pain, fatigue, numbness,and difficulty in doing most tasks. For example, it might take a person with CMT a full minute to button one button on their shirt.
“The CMTA is an awesome organization that supports both research and CMT patients. There have been unbelievable strides made in research over the years. There is real hope of finding treatments and a cure for CMT!”
There is no registration fee for Saturday’s event, but donations are appreciated.
“You can register online through the morning of the Walk. Donations are accepted for up to a week after the event,” she said.
“We have a picnic lunch of hot dogs and pot luck items brought by others, as well as popular raffle baskets to win,” she added. “It’s a fun day outside in a beautiful park with wonderful people! Bring your family and friends! Or make a donation today.”
The CMT walk at the Lake County Fairgrounds is headed up by Ashley Pomykala.
“I decided to run a Walk 4 CMT in the Northwest Indiana area after starting a NWI area CMTA branch,” she said.
“I am trying to help bring awareness to CMT and am trying to build a community for those of us with CMT and people who have loved ones with CMT. I want to create a community for my son, Gideon Moffitt, to have as he grows up living with CMT.
“Community-building is and will always be the biggest takeaway for me.
“I have been a part of the CMTA community since I was a child. I have been a part of the Chicago CMTA branch for years and before that I started out on the CMTA message boards and Facebook groups. In January 2025 I decided that I wanted to help the local community out by creating a Northwest Indiana CMTA Branch for those of us that are out here.
“Charcot-Marie-Tooth disease is something that most people won’t see outwardly,” she said, echoing Doreen’s comment.
“It is a pretty invisible disease that just shows itself as clumsiness, funky feet, and constant frustration for the person with it.
“Many of us suffer from being a fall risk, needing adaptive equipment like leg braces (AFOs), canes, walkers, and even wheelchairs sometimes. It causes us daily discomfort from foot pain, muscle aches/cramps, and numbness and tingling.
“I believe that it is important to make this disease be known across the board like so many other diseases out there.
“There is no fee to register a team for the Walk 4 CMT. All we ask is that you join us and help us with the fundraiser. If you raise $100 you get a free t-shirt and if you raise $500 you will get a free sweatshirt. During the walk we will also be holding raffles to help with fundraising efforts as well. Tickets for those raffles can be purchased at the event. All winners will be drawn and announced during the event. You must be present to win.
“This is the first annual Walk 4 CMT in Northwest Indiana. We are hopeful to be able to host one every year in the future.
“I am passionate about spreading the word about Charcot-Marie-Tooth disease not only because I live with the disease, but most importantly because my 6-year-old son also suffers from this disease. I want him to grow up with a community that knows and understands his differences and I am hopeful that they will be able to find treatments and a cure during his lifetime.”
The walk is a 0.5-mile loop–participants are welcome to walk any distance they are comfortable with–and is open to all ages and abilities. Proceeds benefit the Charcot-Marie-Tooth Association and its ongoing research to develop treatments and improve the quality of life for Doreen and others living with this debilitating disease.
All proceeds support the Charcot-Marie-Tooth Association, a community-led, community-driven 501(c)(3) nonprofit organization with a mission to support the development of new treatments for CMT, improve the quality of life for those with CMT, and ultimately find a cure. Through its Strategy to Accelerate Research (CMTA-STAR) program, CMTA unites the community with clinicians and industry experts to advance treatment development. CMTA has invested more than $33 million in research since 2008.
Learn more at cmtausa.org.
The Chicago Walk already has supporters from Tinley Park, Frankfort and New Lenox area as well as the Chicago area, signed up to participate.