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
View our upcoming events and join us in making NF Midwest great!
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

Be iNFormed Database

Articles about various complications of NF.

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Be iNFormed Database

NF Midwest Database

Our be iNFormed articles are about the various complications of NF and are written for normal (ie. not brainiacs). They are meant to provide basic information and are not meant to substitute for medical care. We are frequently adding articles. Please, let us know if you are looking for something in particular.

Be iNFormed PDFs - Material created or provided by NF Midwest

NF1 Information for Medical Professionals
Take this to your doctors!

Care Guidelines for Adults with NF Type 1
American College of Medical Genetics and Genomics 2018

Neurofibromas (What They are and Types of)

by James Tonsgard, MD

Optic Pathway Tumors in Neurofibromatosis Type 1
by Robert Listernick, MD

Seizures in NF1
by Nikolas Mata-Machado. MD

NF1 Gene Deletion
by Heather Radtke, MS, CGC

Vascular Disease in Neurofibromatosis Type 1
by Cynthia Hingtgen, MD, PhD

Pain in Neurofibromatosis 1
by Staci Martin Peron, PhD and Andrea Baldwin, CRNP

Insurance Coverage for Neurofibroma Removal
by NF Midwest

Procedure Codes for Removing a High Quantity of Neurofibromas
by NF Midwest

Medical Imaging for NF1: Radiation Exposure
by Allison Goetsch, MS, CGC

Scoliosis in NF1
by Christopher Moertel, MD Nov. 2017

Autism Spectrum Disorder Symptomatology in Children with NF1
By Bonnie Klein-Tasman, Ph.D., & Christy Casnar, Ph.D Feb 2018

NF1 Information for Teachers
by NF Midwest w/BC NF Foundation

Learning Problems in Neurofibromatosis-1
by Scott Hunter, PhD and James Tonsgard, MD

Comprehensive Neuropsychological Evaluations for Children with NF1
by Jill Isenberg, Ph.D.

Reproductive Options for People with NF1, NF2 and Schwannomatosis
by Amanda Bergner, MS CGC

Volumetric Measurement in Neurofibromatosis
by Diana Haberkamp, reviewed by Eva Dombi, MD

What is Schwannomatosis
by NF Midwest

Applying for Disability Benefits with Neurofibromatosis
by Ram Meyyappan

Communication Skills of Individuals with NF1
by Heather Thompson, PhD CCC-SLP

What to do if your personal physician doesn’t know a lot about NF?
by Jason Marker, MD

Brainstem Tumors in NF1
by Robert Listernick, MD

People Are Talking

There are a lot of big corporate charities out there that talk about how much they help people, but when we were looking for answers we did not get the help from them. It was NF Midwest that helped us. So it is important to me to get the word out about NF and NF MIdwest so that no other family has to feel as alone as we were when we were searching for answers. WHY SHOULD YOU DONATE TO NF MIDWEST INSTEAD OF THE OTHER GUYS???? To me the answer is simple. They care! Sometimes in life companies or charities get so big that they forget about why they are doing anything to begin with, they forget about the people they are suppose to help. Nf Midwest is NOT this way. They are there for those affected by NF and for their families. Sometimes in life bigger is not better. Our family likes to say that "NF Midwest is Small enough to care...Big enough to make a difference" And I am telling you that my family and others I know in my area that means a lot more then we could say. So please consider helping us in our NF cause and donate to this walk and NF Midwest!

- Myshell

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.