“An Event to End NF” Helped Teen Raise Funds, Awareness for Neurofibromatosis

On May 17, 2024, Ohio was graced with a unique, Wizard of Oz-themed fundraising event called “An Event to End NF.” NF, in this case, stands for neurofibromatosis, a rare genetic disorder of the nervous system. This rare disorder is usually broken up into two categories: neurofibromatosis type 1 and NF2-related schwannomatosis. Neurofibromatosis causes tumors to form on healthy tissue. There are currently no cures.

Despite significant advances in medical understanding, neurofibromatosis as a whole is still misunderstood. Events like “An Event to End NF” serve not only to support the neurofibromatosis community, but to provide necessary funding for nonprofit organizations, research teams, and those affected – like Emily Baron. Emily and her mom Ashley spearheaded the event.

Emily’s Neurofibromatosis Experience

Emily was diagnosed with neurofibromatosis caused by chromosome 17 and 18 mutations when she was just three years old. According to Lissa Guyton from WTVG, the high school freshman has undergone several procedures to manage her condition. She is no stranger to the MRI machine; she’s also had two brain surgeries, with a third upcoming this summer. As you might expect, this has been challenging for Emily. She has missed school and spent weeks away from home. But the teen and her family remain resilient.

Her “An Event to End NF” served to raise awareness of not only what she is going through, but what neurofibromatosis is and what those affected by NF face on a day-to-day basis. People with neurofibromatosis often require frequent medical appointments – for Emily, she’s seeing doctors from neurologists to dermatologists every month – and frequent travel, which can be time-consuming, expensive, and exhausting. A rare disease diagnosis, and the heavy treatment regimen, can also have negative mental health impacts.

At the event, attendees could contribute funds towards Emily’s medical care and support, as well as towards the Children’s Tumor Foundation (CTF). Founded in 1978, the Children’s Tumor Foundation was the first grassroots organization dedicated to finding treatments for those with NF. Today, the CTF aims to advance research, care, education, and support in NF.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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