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Agenesis of the Corpus Callosum: Resources

Condition Information

Recommended Books

Knowing Alex: Life with Agenesis of the Corpus Callosom This poignant and inspirational memoir, written by Alex and his mother, Cindy, tells how their family came to know the person Alex is, and how they helped him become the person he could be. KNOWING ALEX Life with Agenesis of the Corpus Callosum is a story of love and family, friendship and understanding, perseverance and triumph over adversity.

Resources & Support

Agenesis of the Corpus Callosum Parent Blog
National Organization for Disorders of the Corpus Callosum
Aims to “enhance the quality of life and promote opportunities for individuals with disorders of the corpus callosum, and raise the profile, understanding and acceptance of these disorders through research, education, advocacy and networking”.

Books for Kids

ACC and Me by Lynn K. Paul; Cindy Mauro Riesenhauser (Illustrator); Kathryn J. Schilmoeller Meet Dexter! A delightful red-haired boy who has ACC. In this short story, Dexter explains what ACC is and tells the reader how having ACC impacts his life.
ISBN: 9781483582580
Publication Date: 2016-10-01

Questions?

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Robin Lacagnina, MLS
Liaison Librarian, Pediatrics

UR Medicine | Golisano Children's Hospital
Family Resource Library
1st Floor, Room 1.1177
Phone: (585) 275-7710