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!” …
Read MoreWhat Is an ABLE Account?
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….
Read MoreWhy Clinical Trials Matter, and Why They Matter Especially for NF
Every treatment that exists today: every medication, every therapy, every breakthrough, started somewhere. It started with a question, a hypothesis, and eventually, a clinical trial. May 20 is National Clinical Trials Day, a moment to recognize the remarkable system that turns scientific ideas into real-world answers. For the NF community (patients, families, caregivers, and advocates)…
Read MoreUniversity of Chicago NF Clinic Update
Dr. James Tonsgard, longtime neurologist and Director of the Neurofibromatosis (NF) Clinic at the University of Chicago, has announced that he will retire from seeing patients at the end of 2026. Dr. Tonsgard has served as a clinician at the University of Chicago for 49 years and has led a dedicated NF clinic for more…
Read MoreWhere Belonging Can Lead: Rachel’s Journey with NF Midwest
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…
Read MoreMcKenna Had an Idea. A Few Weeks Later, More Than 100 People Showed Up!
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…
Read MoreParent/Legal Guardian Perspectives on Youth NF1-OPG Neuroprotection, Neuro-Enhancement and Vision Restoration Treatment Strategies
Offered by: Children’s Hospital of PhiladelphiaConducted by: Matthew Hocking, PhD The specific aims of this project are to describe parent’s perspectives on caring for youth with NF-OPGs, and the factors they consider in choosing neuroprotection, neuro-enhancement and vision restoration treatment strategies using focus groups of parents/LG of youth with NF-OPGs. We are looking to have…
Read MoreNothing to Fear: A Children’s Book on NF
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…
Read MoreNF Awareness Month Reached Across Our Six-State Region
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. …
Read MoreA Conversation about NF1 and Everyday Skills
Everyday Skills in NF1: What Parents Can Watch for and How to Help A practical resource for parents and caregivers from NF Midwest Parent Conversations Parents and caregivers affected by NF carry a lot of questions, and that’s normal. Some are medical. Some are emotional. And many are practical: That is why NF Midwest created NF Parent Conversations, a welcoming online…
Read MoreMeet the 2026 NF Midwest Scholarship Recipients
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…
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