Faces of CMT

Grace’s Courage Crusade

Grace’s Courage Crusade is a passionate mission of the Sidoti/Caldarone family…

To support those living with Charcot-Marie-Tooth disease, which affects Marybeth Caldarone and her daughter Grace, who has CMT2A. Our mission includes both funding cure-driven research and raising awareness of CMT worldwide. We achieve these goals through several pathways.

First, we come together each fall at our annual fundraiser in scenic Newport, Rhode Island.

Second, we elevate the public profile of CMT through our children’s book series, written by Carol Liu and Marybeth Caldarone. The series, beginning with Arlene On the Scene and now featuring a sequel, Arlene, the Rebel Queen, educates children, parents and educators about CMT through a lively and humorous story, while providing a positive role model for those growing up with CMT. Finally, through our School Outreach Program, we bring an important message about the value of embracing differences to elementary schools across the country.

 

Learn more on this topic

Latest News and Related Blog Posts

Grace’s Courage Crusade Brunch 2013

A bright, crisp day greeted supporters of Grace’s Courage Crusade as they gathered to enjoy brunch by the beach with breathtaking views at the Atlantic Beach Club in Newport, RI. Following the amazing buffet spread, the crowd got intense over a dessert auction that offered tempting sweets and goodies provided by local businesses.

Another Successful Year Spreading CMT Awareness

Forty-six schools, eight states, 6600 students. The third year of the Hereditary Neuropathy Foundation’s School Outreach Program was our best yet! From the authors’ home state of Rhode Island, to our current home in New York, and on out to Chicago, Philadelphia, Washington, DC and Dallas, we met our goal of reaching more students, teachers and parents than ever.

Talking With Classmates about CMT

Older sister Erin, who also lives with Charcot-Marie-Tooth, pitched in along with mom, Monica Hughes. With a polished powerpoint show that included pictures and videos, plus doughnuts at the end, Miah’s classmates were engaged and ready to understand!

Newsletter

Join for notifications on events, campaigns, & news