42 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
Get Involved
“..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. ”
-Sue
Learn
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
Events
“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
News/Blog
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
Support

Participate in Research

To move our knowledge of NF forward many people are needed to participate in research.

Help Change Your Future

There are many ways to participate in neurofibromatosis research. Some may be more invasive such as a clinical trial testing a medication. Some may simply involve answering questions or letting a researcher examine you and follow your case. Some research may provide the benefit of extra care and expertise and may provide vital testing such as MRIs at no cost to the patient. All research advances our understanding of neurofibromatosis to lead to better treatments, more knowledge of how a patient may be affected, and to an eventual cure.

How can I participate in research?

Go to clinicaltrials.gov and research the various clinical trials for neurofibromatosis or schwannomatosis.
Register at researchmatch.org and you will be contacted if there is ever a trial that you might be eligible for.
Tell your NF doctor that you are interested in learning more about clinical trials or research studies.
Keep abreast of opportunities that may be listed on this site or through social media.

Sign Up for the NF Patient Registry

EVERYONE with NF1, NF2, or schwannomatosis should register with the NF Patient Registry. Registration is confidential and protected and participation after registration is not required.

ClinicalTrials.gov

Search for publicly and privately supported clinical studies on neurofibromatosis and schwannomatosis. Learn the requirements and inquire about participation.

Highlighted Research Opportunities

NF Midwest frequently posts opportunities to participate in research. Often these may be simple surveys or studies. Check out opportunities that NF Midwest has highlighted in posts.

Why should I participate in research?

Participation in research advances our understanding of neurofibromatosis and schwannomatosis to better understand the course of the disorder.
Of course, research leads to better treatments and hopefully an eventual cure.
Enrolling in a study might give you or your child a chance to see extra doctors or find out more facts about you or your child’s condition. A study may also be able to put you in touch with families going through what you are going through.
A clinical study may offer closer monitoring or additional testing for you or your child, which may not be part of regular care.

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.

Donate

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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.