PARKLAND, FL- Lara and Chad Rustici never thought they'd be involved with Charcot-Marie-Tooth disease. CMT, as Charcot-Marie-Tooth is known, is a rare disorder in which the motor and/or peripheral nerves are affected, resulting in muscle weakness and atrophy along with sensory loss.
The Rustici's have three children, and they had no idea what was affecting their firstborn child, Mason. Mason wasn't able to walk until he was 19 months old because of low muscle tone. Other symptoms began to show, but no one could identify the rare disorder he was carrying. It became a frustrating process for the Rustici family, as they knew something wasn't right, but just couldn't get an accurate diagnosis. Through genetic testing, it was finally determined that Mason has CMT.
"How can they help my child if no one has ever heard of CMT?" asks Lara. "I knew I needed to get involved. I needed to do something."
After exploring the world of CMT and learning a lot more about it, the Rustici family found that the best way to raise the visibility for CMT is through CMT awareness walks that are held around the country. They have successfully held two CMT walks in Florida raising over $55,000 combined.
The walk is held in November to honor Mason's birthday as he turns 9 on November 23. The money raised will go toward the STAR program, which provides treatment and research for CMT cures.
"People in Parkland are wonderful and very generous to help with a good cause," shared Lara. "I attribute the success of our walks to this wonderful community."
Typically, the Parkland Walk 4 CMT is held at Pine Trails Park and consists of family fun activities in addition to the walk. Due to the COVID-19 pandemic the walk will be held virtually this year. Anyone can participate by walking, riding, swimming or doing whatever they enjoy now through November 22, 2020.
As Mason's CMT disease progressing the Virtual Parkland Walk 4 CMT is helping to fund critical research for a cure for Mason and 2.6 million people suffering with it worldwide.
"We are overwhelmed with gratitude for all the support and generosity of our community," shared Lara.
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