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.
I just had to commend you on an amazing event yesterday. I have to admit, this whole fundraising experience has been extremely emotional for me. I've been focusing on NF and thereby losing sleep worrying about [my daughter's] future way more than I'd like to. To be honest, I was a little worried about attending the walk and getting more upset. I actually had the best time. It was such a fun, positive event. I felt like everyone had so much fun and it was a great thank you to all of our supporters. You all do such incredible work. And the award for top-raising team...I was super excited to win the title and the plaque, I had no idea we'd get a bag full of awesome loot! Thanks so much for everything. A part of me wishes I had still never heard of NF, but since it's in my life to stay, I'm so glad that all of you are too. We are going on vacation next week and I'm taking the rest of the month off from NF, but later in the summer I have a group of amazing moms in my community ready to enlist and help me plan a local fundraiser.
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.