NF Stories
These stories highlight the journeys of patients and families living with neurofibromatosis. Each is unique but they all share the common thread of individuals living their best life despite the NF diagnosis.
We hope these stories inspire you and remind you that you are not alone on the NF journey.
Individuals with NF1
Living with NF: What Trauma, Healing, and Empathy Taught Me
Living with Visible NF: Finding Community, Faith, and Belonging
When Visibility Becomes Power: One Woman’s Experience with NF1
When You Become the Expert: Navigating NF Without a Clinic
From Diagnosis to Independence: An Adult Life with NF1
Considering Clinical Trials for NF1: One Family’s Experience
Raising Twins with NF: Visibility, Courage, and Living Fully
Finding Belonging: A Young Adult’s NF1 Journey
Fighting for My Son: A Father’s Journey with Childhood NF1
NF1 Parents & Caregivers
Children & Young Adults with NF1
Individuals with NF2-SWN
Still Emily: Living with NF2 and Finding Hope
I Can Hear Him Say ‘I Love You’: Living with NF2
Never Give Up: Two Sisters, One Family, and Life with NF2
NF Runs Through Our Family: But It Doesn’t Define Us
NF2-SWN Parents & Caregivers
My Dream is to Heal- Ryan’s NF2 Story
Share your own story
Whether you live with NF, care for someone who does, or support the community in another way, your experience helps others.
Sarah Gorden
This is the story of Peter Rabbit and his battle against his nemesis, Mr. McGregor, the grouchy Scottish gardener.
