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Publications

X-Linked Coffin-Lowry Syndrome Phenotype differrences by Sex

Cure NDD is proud to present new research exploring sex-related differences in the clinical features of X-linked Coffin-Lowry syndrome.

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This work examines how the condition may present differently in females and males, helping to deepen our understanding of the disorder’s diverse clinical spectrum and improve recognition, diagnosis, and care.

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📍 Presented as a poster at the Child Neurology Society Annual Meeting 2026
📅 October 14–17, 2026 | Montréal, Québec

Building a Natural History and Patient Registry Platform for Coffin-Lowry Syndrome (CLS): A Roadmap for Therapeutic Readiness

Presented at 2026 American College of Medical Genetics (ACMG) Annual Clinical Genetics Meeting

X-Linked Coffin-Lowry Syndrome Phenotype Differences By Sex

Mary C Hames, Brian Leonard, Jin Lee, Lauren Beach

BioLogic Pharma Solutions, CureNDD, Northwestern University

Children’s Books

My Magic X

My Magic X is a heartfelt picture book about a child with an extra X chromosome discovering that what makes them unique is what makes them special. A story of love, support, and celebrating differences.

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This uplifting story helps children understand:
• Being different is something to honor
• Everyone’s journey is unique
• Love and support make a difference
• Our uniqueness is our superpower

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Perfect for families navigating rare genetic conditions, X-linked differences, developmental delays, and conversations about inclusion and self-acceptance.

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Little Hands, Big Comfort

Little Hands, Big Comfort is a gentle children’s book about a young girl learning that small acts of love and care can bring comfort when a parent is living with chronic illness.

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This story helps children understand:


• They are not responsible for a loved one’s pain
• Kindness and care make a difference
• Love, patience, and presence matter
• Families can stay strong through hard days

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A heartfelt story that encourages empathy, confidence, and hope.

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