This May, a Philadelphia-area grandmother and a new friend are working to shine a light on a rare and often overlooked condition called neurofibromatosis, or NF.<\/p>\n
May marks Neurofibromatosis Awareness Month.<\/p>\n
The genetic disorder affects about 1 in every 3,000 people and causes tumors to grow along nerves throughout the body. For many, it brings chronic pain, vision issues and other serious complications.<\/p>\n
Hannah Hetzel is one of those people. “I actually don’t work currently. I deal with a lot of chronic pain,” she said.<\/p>\n
Hetzel was diagnosed with NF and an optic glioma that impacts her vision.<\/p>\n
“I had one in my leg \u2026 I have an optic glioma on my optic nerve,” she explained.<\/p>\n
Most days, Hetzel uses a wheelchair, but that hasn’t stopped her from living her life. From rock climbing to simply enjoying a summer day outside, she’s determined to keep moving forward.<\/p>\n
“I can still have a good life,” she said.<\/p>\n
And she’s not alone in her fight.<\/p>\n
Trish Chupein was drawn into the NF community after her grandson was diagnosed. Since then, she’s made it her mission to advocate for awareness and research.<\/p>\n
“I’ve gone to Washington, D.C. twice,” she said.<\/p>\n
Chupein has joined hundreds of others from across the country, pushing lawmakers to continue funding research.<\/p>\n
“One day when I’m not around \u2026 NF Northeast is my love letter to him,” she added. Advocates say awareness is critical \u2014 not just for diagnosis, but for progress.<\/p>\n
Organizations like NF Northeast<\/a> are working to educate families and push for advancements in treatment.<\/p>\n While some tumors can be treated, others, like Hetzel’s, are far more complex.<\/p>\n She manages daily pain, takes medication, and relies on a feeding tube \u2014 realities many people don’t see.<\/p>\n “It’s unique to what I am going through than what somebody else may experience,” she said.<\/p>\n This weekend, dozens of families and supporters will come together for an annual walk to raise money and hope for those impacted by NF.<\/p>\n For Chupein, it’s about showing up for her grandson. For Hetzel, it’s about showing others what’s possible.<\/p>\n How to help<\/p>\n Here’s how you can join or support the Steps to Cure NF Walk:<\/p>\n Sunday, May 39-10 a.m.Wilson Farm Park in Wayne, Pennsylvania<\/p>\n Supporters can attend, donate, or learn more by visiting NF Northeast’s website<\/a>.<\/p>\n