We Are All Rare - ADCY5.org (sold in sets of 12)

When our daughter, Lilly, was starting school, I would have benefited from a tool to share her challenges with teachers, young children, and their families. I wanted to help people understand that she was just like them, she just needed some help. Lilly is now in college and together we wrote the book to help start the conversation about challenges children have because of Rare Disease. We want to introduce equipment, new things, and give simple examples of things you can do to be a helpful friend.

Lilly’s wish has always been to be treated like her peers. We all strive to be included and accepted. There are small things we can all do each day to make one another’s lives brighter. We hope this coloring book will be a useful teaching aide to begin a conversation about people who are different, but just like you. Share it with your classroom and we hope it will be taken home to families to share with siblings and friends.

Gay, Steve and Lilly Grossman

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According to the National Institutes of Health (NIH), there are over 7,000 rare diseases affecting nearly one in 10 Americans.

ADCY5-related Dyskinesia is a movement disorder that is caused by a variant on the ADCY5 gene. It is characterized by involuntary movements, muscle weakness, and sleep disruption. It is often misdiagnosed as cerebral palsy, epilepsy, mitochondrial disease, and other undiagnosed movement disorders. ADCY5.org was established in 2015 by Gay and Steve Grossman after their daughter, Lilly, was diagnosed after a long 15 years of being undiagnosed. The non-profit supports families, clinicians, and researchers as we all work together to find a treatment.

For more information, please visit www.ADCY5.org.