Grace’s Courage Crusade
Some families respond to a difficult diagnosis by turning inward. The Sidoti/Caldarone family responded by building a movement. Grace’s Courage Crusade is their mission, and it has grown into one of the most creative, community-rooted fundraising efforts supporting the Hereditary Neuropathy Foundation.
The Story Behind the Crusade
Charcot-Marie-Tooth disease is not a stranger in the Caldarone home. Marybeth Caldarone lives with CMT herself, and her daughter Grace has been diagnosed with CMT2A, one of the more severe subtypes of the disease. Rather than let that reality define the limits of their lives, Marybeth, her family, and the broader Sidoti/Caldarone circle decided to do something about it.
Grace’s Courage Crusade was born from love, and it runs on community. Every dollar raised goes toward funding cure-driven research and raising awareness of CMT so that no family has to face this diagnosis without hope or support.
How They Make an Impact
The Crusade pursues its mission through three distinct pathways.
An Annual Fundraiser in Newport, Rhode Island
Each fall, the Sidoti/Caldarone family gathers friends, neighbors, and supporters for their annual fundraiser in scenic Newport, Rhode Island. It is a celebration of community, of Grace, and of everyone living with CMT who deserves better treatments and, ultimately, a cure.
The Arlene Book Series
Marybeth Caldarone and author Carol Liu created a children’s book series to bring CMT into classrooms and living rooms in the most welcoming way possible. The first book, Arlene On the Scene, introduces young readers to a lively, funny character who happens to live with CMT. The sequel, Arlene, the Rebel Queen, continues the story. Both books are designed to educate children, parents, and educators about CMT while giving kids who use braces or other supports a positive, joyful role model they can see themselves in.
The School Outreach Program
Through the Crusade’s School Outreach Program, the family brings a message about embracing differences to elementary schools across the country. These visits open conversations that matter, helping the next generation grow up with more empathy and more awareness of conditions like CMT.
Why They Raise for HNF
The Hereditary Neuropathy Foundation is the leading nonprofit dedicated to improving the lives of people with CMT and related inherited neuropathies. HNF funds the research that moves science closer to treatments and a cure, provides education and support to patients and families, and advocates globally for this underrecognized disease. When Grace’s Courage Crusade raises money for HNF, it is investing directly in the scientists, clinicians, and community programs working on CMT every day.
To learn more about what your support makes possible, visit Support the Cure or explore Team CMT, HNF’s broader community of fundraisers walking, running, and creating alongside families like the Sidoti/Caldarones.
Support Grace’s Courage Crusade
You can make a direct donation to the Crusade and HNF’s research mission at Grace’s Courage Crusade fundraising page. Every contribution, large or small, brings us closer to treatments that work and a future without CMT.
If this family’s story has moved you, consider starting your own fundraiser for HNF. Learn how to get involved at Team CMT or make a one-time gift at donate.
Who is Grace, and why is this crusade named after her?
Grace is the daughter of Marybeth Caldarone, who also lives with CMT. Grace has been diagnosed with CMT2A, a subtype of Charcot-Marie-Tooth disease. The Sidoti/Caldarone family named the Crusade in her honor to celebrate her spirit and to channel their love for her into action that benefits the entire CMT community.
What is Charcot-Marie-Tooth disease?
Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting the peripheral nerves. It can cause progressive muscle weakness, reduced sensation, and difficulties with mobility. CMT2A is a particularly severe subtype caused by mutations in the MFN2 gene. The Hereditary Neuropathy Foundation funds research and provides support to help everyone living with CMT. Learn more at Support the Cure.
How does money raised by Grace’s Courage Crusade reach patients?
Funds raised through the Crusade support the Hereditary Neuropathy Foundation, which directs money toward cure-driven research, patient education, clinical programs, and global CMT awareness. HNF is a 501(c)(3) nonprofit with a strong track record of turning community generosity into scientific progress.
Can I get a copy of the Arlene books for my child or classroom?
Yes. Arlene On the Scene and its sequel Arlene, the Rebel Queen, written by Carol Liu and Marybeth Caldarone, are available for purchase. Reach out through the Crusade’s fundraising page at Grace’s Courage Crusade for ordering information. The books are also used in school outreach visits across the country.
How can my family start a fundraiser like Grace’s Courage Crusade?
HNF welcomes community fundraisers of every size and shape. Whether you want to host an event, organize a walk, or create something entirely your own, the Team CMT program is your starting point. You can also reach out through the donate page to connect with the HNF team directly.