Meet Our Families

Stories from Rare Families and Affected Adults.

You’re not alone. Meet people like you. See Rare photos and read stories from parents and affected adults in their own words about their families, challenges in getting and coping with a diagnosis, and relief in finding people who truly understand.

Atticus Gamble

Noa Greenwood

Living with Canavan Disease: Hope for the Future

Atticus Gamble

Atticus Gamble

Living with Infantile Tay-Sachs Disease: Dance Parties and Finding a Community Who Understands.

Stephanie Wright

Stephanie Wright

Living with Late Onset Sandhoff Disease: How Sharing Stories Leads to Faster Diagnosis.

Stephanie Wright

Mona & Owen Vogel

Living with Juvenile Tay-Sachs Disease: Building a Life that Matters

Vayle Rose

Vayle Rose

Living with Canavan Disease: Sharing the Little Moments that Mean So Much

Vayle Rose

Growing Up Rare: The Sibling Perspective

Emma, Esteban, and Samie’s stories of life as a rare sibling.

Vayle Rose

Jessie Jackson

Living with Juvenile GM1 Gangliosidosis: Squeezing Every Last Drop Out of Life

Vayle Rose

Facundo, Giuliana, y Amanda

El camino hacia el diagnóstico, la conexión y la comunidad

The Road to Diagnosis, Connection, and Community

We’re Here for You Too

Our Family Services Team supports all family members. You’re welcome to email Becky for support at any time. We’ll answer your questions and send information and resources. We can even provide introductions to sibling mentors who understand what siblings are going through.

Becky Benson
Director of Family Support
Email Becky at becky@ntsad.org