43 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

Raise Awareness

Research brings promise to the future! Awareness brings hope now!

Increase Awareness. Reduce Stigma. Grow Love.

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.

How to Increase Public Awareness and Acceptance of NF?

Share a Story

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 About NF

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
NF Merchandise store; neurofibromatosis

Wear the Word

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

The Effect of Awareness

Improved Care

  • Creates more informed, experienced physicians and increases access to appropriate therapy and better care.
  • Helps people with NF to better understand the disorder so that they can better care for themselves and seek out appropriate care providers.
  • Leads to more understanding and empathy for those who have to go on disability.

Better Quality of Life

  • More understanding of what living with NF is allows the public to help people with NF live fuller, happier lives, and minimize the burden of their NF. People with NF often hide their disease from friends and family, and when they cannot do that anymore they disappear from society altogether. Public ignorance makes those with NF feel misunderstood, discriminated against, and marginalized, leading to loneliness, depression and decrease in quality of life, all of which further exacerbate the negative impacts of NF.
  • Employment can sometimes be a problem for people with NF. As they get fired or pushed into retirement prematurely, often soon after diagnosis, they could potentially loose their incomes and end up alone and isolated. A better understanding of NF would help employers learn how they can use people with NF, which will help them as well as the broader society, by keeping those with NF active in the economy.

More Research

  • Leads to more public support for NF research and more funding for research and other support programs.
  • Moves NF higher on government agendas – Governments are the ones who can provide easier, cheaper access to treatment, more doctors, improved diagnosis, and more support services.
  • Focusing exclusively on research limits support to the existing pool of people who already understand the case, so more research does not unfortunately lead to increased awareness.

People Are Talking

Today I had the chance to get together with a friend that I haven't seen in quite some time, and we managed to talk for three hours about our boys, ages 9 and 12, both with NF1. On my way home, I thought about how blessed I have been and the blessing that has been NF Midwest. My family's lives have been tremendously impacted by the NF Midwest family.  That's truly what they have become to us-family.  Earlier this spring, we had the opportunity to go to the NF Midwest office in St. Charles, IL.  I'm not quite sure what I expected, but there were only three people running this organization that serves NF families in six states! Little did I realize that this visit would lead to the biggest adventure in all of my son 9 years, as he got to go to NF camp in Virginia. Not a day goes by since he came home that camp isn't mentioned. Even more remarkable than that is that those campers’ experiences were made possible by people who just want to make a difference. Making positive differences in the lives of people with NF is ultimately what NF Midwest represents to me. Of course, their contributions to research are extraordinary, and our family has seen first-hand how wonderful camp can be, but I am just as moved when I see a simple message from the staff at NF Midwest offering thoughts and support for someone who is scared and anxious about a test result. The uncertainties of NF can be too much for people to bear and can leave them feeling powerless (yes, I am speaking from personal experience). Our participation in NF Midwest has helped us take some of that power back, and has given us hope.

- NFmom
Find NF Care

Get the best care! Find an experienced NF doctor/clinic in the NF Midwest region.
Be iNFormed

Knowledge is power! Learn and understand as much as possible about neurofibromatosis.
Community Support

Don’t fight alone! Meet others in the NF community to learn and share experiences.

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© 2025 Neurofibromatosis Midwest - non profit 501(c)(t3). Site Map - Privacy Policy
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.

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