Stories

Everybody diagnosed with Neurofibromatosis has a different story to tell. We hope you are inspired and encouraged by these courageous individuals who each face NF in their own way.

PAUL

Paul shares his many insights of living with NF. He’s not only lived with the disorder but also supported hundreds of other individuals in his role as the Founder of the BCNF.

JENEECE AND ANGIE

Learn how this dynamic mom helped her daughter become an advocate for her own health care.

TIM

Tim shares his message of the importance of living life with the power of positive thought and laughter.


Tara's Story

TARA

Join Tara, a young adult with NF1, who shares her journey and insights of life with NF through childhood into adulthood.

Cynthia

CYNTHIA

Cynthia is the mother of Tara. She shares her insights to coping emotionally with the diagnosis and its related challenges, while gaining and providing effective support as the parent of a child with NF1.

Lalaine and David

LALAINE AND DAVID

Lalaine and David are the parents of a young teen son with NF1. They share their personal insights to the challenges of raising a child coping with NF related issues with dignity, positive self image and faith.


Hugh

HUGH

Hugh is an adult sharing his experiences and insights of his life with NF2. Hugh talks of how he copes and continues to live life to the fullest despite profound deafness and other challenges.

Desormeaux Family

DESORMEAUX FAMILY

Suzanne shares the diagnosis of her son, Haven, with NF1 and its impact upon herself and her family. She also shares her journey of learning to advocate for a child with learning disabilities, as well as coping with the uncertainty of life with NF.