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These links will take you to stories about deafblindness from a number of outside websites and newsletters. Enjoy!

Stories by Family Members

Love Not Fear: Learning about Life from Norman

Growing with Your Child

My Deaf and Blind Daughter Beat the Odds Because I Expected Her To

Taking CHARGE of Communication

Ohio Families Share Their Stories [Videos]

The Possibilities Are Endless

Celebrating Life

A Girl with Optic Nerve Hypoplasia…A Beautiful Perspective

Reaching for Skye

Parent Stories from the CHARGE Syndrome Foundation

Hunting with Dad

What Is Maddie Going to Be When She Grows Up?

Camping with Laci Faith

CHARGE, Charged, and Charging Forward: Post Secondary Transitions for Our Son with CHARGE Syndrome

Grandparenting a Deafblind Child

Sami’s Story (CHARGE Syndrome)

Father’s Day…Living a Different Kind of Dream

Dylan and Kim: Life with CHARGE Syndrome [Podcast episode]

Coming Home to Disability: One Sibling’s Story

Tania Khan: A World of Deafblindness

Sibling Narratives (from California Deafblind Services)


Stories by Individuals Who Are Deafblind

TEDx Talk by Haben Girma (Deafblind Graduate of Harvard Law School) [Video]

I Want You to Know: My Reflections on Publishing a Book

Our Life in Music

Living the Good Life: A Glimpse into Life with Usher Syndrome

BFF: Our Lives So Far

Biography of Anindya Bapin (Technology Expert and Advocate Born in India)

Journey of a Deafblind Woman

Thoughts on “Transitioning”: One Deafblind Woman’s Approach to Life

What’s Your Transition Story? One-on-One with RJ [Video]

Living with Neurofibromatosis Type 2


Other Stories

Transition and Adult Life Success Stories

Going Deaf and Blind in a City of Noise and Lights

Two Challenges, One Unique Woman

Stories of Young Adults with CHARGE Syndrome

A Successful Journey to the United States



A Mom’s Musings – Heather Withrow is the mother of Orion, a seven-year-old who is deafblind

Heathersjoys – Heather Joy Magdelano has two children, Soliz and Camila, who have Wolf-Hirschhorn syndrome

Navigating Chloe’s World – Jane Ring is the mother of Chloe, who was born deafblind and lives in the United Kingdom

Kodiak My Little Grizzly – Heather is the mom of Kodiak, who has CHARGE syndrome

Mama Shu – Dannell Shu writes about her journey with her son Levi, who was medically complex and passed away at age seven

Molly Watt – Molly has Usher syndrome and lives in the United Kingdom

John Lee Clark – John is a Deafblind poet and writer

Paths to Transition – A site/blog from Perkins School for the Blind focusing on the transition to adulthood

WonderBaby – A site by and for parents of children with visual impairments and additional disabilities

Usher Syndrome Coalition Blog – Includes posts on a variety of topics; some are by individuals with Usher syndrome or family members

OUR MISSION:  NFADB exists to empower the voices of families with individuals who are DeafBlind and advocate for their unique needs.


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Phone: 800.255.0411
Fax: 516.883.9060



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