Research brings promise to the future! Awareness brings hope now!
You can become an activist and help raise awareness for NF. We have included here some tools to help. You may also contact the office about other ways to raise awareness.
Everyone has a story about how NF has impacted their lives. It may be that you have a child with NF or schwannomatosis; you may be affected; you may have seen the struggles of a friend; or maybe you just passed someone who has NF at a grocery store.
If you share that story on social media, through email or in a conversation with friends then you raise awareness.
You can take it a giant step further by creating a fundraising and awareness page on Firstgiving and sharing that with the world.How to Set-Up Firstgiving
Learn everything you can about NF1, NF2 and schwannomatosis and teach the world. Be knowledgeable and iNFormed.
You can start by checking out our Learn section and signing up for updates under Contact Us. Be sure to check back frequently for new articles and iNFormation.
Look for webinars, symposiums and other educational opportunities to help make you a true ambassador for the cause.Learn About NF
Wear the word on your body, your car, your wrist, your laptop…where ever you can. Hand out information about NF whenever you can,
Help the world to see it and recognize it. We have merchandise available at our store that includes clothing, wristband as well as business cards and brochure.
We are always looking for new and creative ways to spread the word. Let us know your ideas!Awareness Store
We thought the symposium was really great. It was really informative and was great to meet other families. Thank you for specifically introducing us to the couple from Tinley Park. We also had a chance to talk with some of the doctors during the lunch period and that was really helpful as well. …. … we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it's all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. …I also really liked the check presentations! How great to see the money/research going straight into the hands of the doctors.
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.