Category: General

Rachel was 13 when she first attended Camp NF.  At an age when so much was changing, camp gave her something she deeply needed: the chance to meet other young people who understood life with NF.  “NF camp gave me the opportunity to connect with others who had a shared experience and come to understand…

McKenna Smith had been thinking about doing something for the NF community. She wanted more people to understand NF, and she wanted to raise funds to help individuals and families find care, resources, support, and connection.  Then she saw NF Midwest’s Walk Your Way campaign and sent us a message.  From there, McKenna got to…

When Ben returned home from Camp NF, he had plenty to talk about. He had made friends, tried new things, and even spent a night camping in a tent.  His mom, Amy, heard something more in those stories. She heard confidence.  “That independence was huge for him, and for me,” she shared. “It was priceless!” …

If you or someone you love is living with NF, you know the costs can add up: therapies, assistive devices, specialists, and more. An ABLE account is a savings tool built to help with exactly that. The Basics ABLE stands for Achieving a Better Life Experience. It’s a tax-advantaged savings account for people with disabilities….

For young children with neurofibromatosis, medical appointments can feel big, unfamiliar, and sometimes scary. An eye exam, an MRI, a doctor’s visit, or even the mention of a needle can bring up questions that are hard for a small child to understand — especially between the ages of 3 and 7, when imagination is strong…

Thank you to everyone who helped raise awareness for neurofibromatosis (NF) during May!  This year, NF Midwest families and advocates helped bring NF Awareness Month into communities across our six-state region. Through state and local proclamations, more people had the opportunity to learn about neurofibromatosis and recognize the families who live with NF every day. …

The NF Midwest Scholarship Program is proud to celebrate another year of supporting students with neurofibromatosis as they work toward their educational dreams.  Each year, NF Midwest awards scholarships to students across our six-state region. These students are pursuing their goals while also navigating life with NF, and we are honored to play a small…

NF Midwest Scholarship Applications are now open! This is your sign to kick off the new year by pursuing your post–high school education goals. The scholarship is available to adults with NF, including neurofibromatosis type 1, NF2-related schwannomatosis, and all other types of schwannomatosis. Applicants must live within our service area of Illinois, Indiana, Iowa,…