NF Awareness Month is a time to honor the resilience, courage, and lived experiences of individuals and families navigating neurofibromatosis (NF). This year, we invited members of our community to share their personal stories—and the response was powerful. Each story is different, but together they paint a picture of strength, perseverance, and hope.

Caroline was diagnosed with NF1 at just 9 months old after her parents chose genetic testing over a “wait and see” approach. The results revealed a rare whole gene deletion, leaving many unknowns about her future. Today, at 3, she’s thriving—“playing and being a normal kid.” Her family has turned uncertainty into action by founding GiveNF, driven by one simple truth: “Caroline is our why.”

At 66, Chris reflects on a lifetime with NF1 and multiple surgeries with grounded perspective: “Some good days, some bad days…just keep on trucking.” His story is a steady reminder of endurance.

For Erin, NF spans generations. She has undergone 25 surgeries and now prepares for more, while her 13-year-old son recently had a major spinal fusion. “He’s healing nicely,” she shares—a small sentence carrying immense strength.

Cynthia Rodriguez Brousse, diagnosed at 13, has faced both medical and social challenges, including 27 surgeries. Despite obstacles, she’s built a meaningful life rooted in connection and perseverance.

Lana’s journey is marked by extraordinary medical challenges from infancy, including an aggressive optic tumor, brain surgery, and years of treatment. Now 8, she’s seeing hopeful progress. Through it all, she “radiates joy and strength.”

Madison, 18, grew up feeling different while navigating NF alongside ADHD and autism. “I was always ashamed to explain it,” she says—but today, she’s found confidence and understanding, learning to advocate for herself.

Mandy’s family discovered NF across three generations at once. Since then, her son has had four surgeries, and Mandy underwent brain tumor removal. “It’s been a roller coaster… but we’re thankful we’re here to tell our story.”

From Egypt, Mohamed shares a deeply personal journey of living decades without support or awareness. “I walked alone. For 48 years. But I walked.” Today, he’s working to change that—for others and for the future.

Oscar, diagnosed as a toddler, is now 13 and thriving. “Not everything is easy, but he never complains.” His quiet strength and joy shine through.

Tayyaba Aziz, from Pakistan, has faced both serious medical challenges and social stigma. Despite this, she continues to speak out and educate others, reminding us that resilience is also found in finding your voice.

Together, these stories span ages, backgrounds, and experiences—but they share one thing: courage.

This NF Awareness Month, we’re honored to help amplify these voices—but there are so many more stories to tell. We invite you to continue sharing your journey with us. Send your story and a photo to admin@nfnetwork.org for a chance to be featured on our social media channels. Your voice matters—and your story could be the one that inspires someone else to keep going.

 

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