Our NF Midwest community is working together to improve the lives of people with NF. We have great group leaders in areas throughout the Midwest.
Wonderful volunteers have stepped up to support the NF community in several areas that NF Midwest serves. These volunteers are NF Midwest liaisons. They may be our main connection to a local clinic. They also may help us to put together educational, awareness and fundraising opportunities. Most importantly, they offer support to people locally.
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.