REAL STORIES - VIDEOS

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.
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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.

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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.

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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.

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