Neurofibromatosis (NF) is a complicated and often little known disorder. NF Midwest strives to build a strong, educated community of NF fighters. Since 1991 we have held an annual symposium in October to educate the NF community about neurofibromatosis and to bring families and individuals together to learn from each other. At this symposium we bring in experts to speak about neurofibromatosis and other topics that strengthen us.
In the spring we sponsor “Lunch with the Doctor” meetings throughout the region. These are casual, open sessions with NF clinicians and offer an excellent opportunity to ask specific questions and hear what others are asking about.
To educate the public and raise awareness we work with the NF community and other supporters to hold events that bring neurofibromatosis into the public eye. These events also raise much needed funds for research, clinical care and other programs. Our Great Steps 4NF walks are the hallmark of this work. In 2015 we organized 7 walks in 5 states, including the largest walk for neurofibromatosis in the nation held in Naperville, Illinois which generally brings out over 1,000 people and over 60 families with NF.