We are on a mission to raise the public visibility and awareness of the neurofibromatoses.
For NF Midwest raising awareness means educating the public and helping them to care.
Most people don’t know much about neurofibromatosis (NF). Those that do don’t always understand the incredible challenges of NF and the needs of people with NF.
One step towards towards easing the challenges of those with neurofibromaosis and schwannomatosis is to increase the understanding and support from the public. For that the public needs to know that neurofibromatosis exists, understand how awful it can be, know how they can help and want to make a difference.
NF Midwest staff, supporters and patients are often visible at professional and public events. These may be medical meetings, local festivals, other non-profit events and more.
We also reach out to the media to publicize events, news or stories.
NF Midwest has developed material for people to hand out to the public. This includes brochures, business cards and special cards for people who are so affected that they may find someone starting at them,
We also have shirts, stickers, wristbands and more.Awareness Store
NF Midwest shares personal stories through the media, our website and social media. We also provide the means for people to share their stories with others and develop social media posts for sharing.
4 years ago, my daughter was diagnosed with Neurofibromatosis at the age of 4 months. I had never heard of it. I was given a brochure for NF Midwest from her doctor and I signed up for their symposium. Shortly thereafter, I received a call from the Director, Diana. She let me know that her husband and two children have NF as well. She asked if I had any questions, and let me know that they were there for us. I had just received shocking, frightening news about my infant child. I didn't know where to turn, and suddenly I had a place to go for answers and help. NF Midwest has been there for my family every step of the way. We are so grateful for the work they do, and proud to support it.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.