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

Be iNFormed Database

Simple articles about various complications of NF.

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 Resources

Non-Scientific Articles

Welcome to Holland

www.emilyperlkingsley.com By Emily Perl Kingsley

be iNFormed Series

Congenital Pseudarthrosis of the Tibia/Fibula in Neurofibromatosis Type 1 (NF1)

NF Midwest | 2021
By Nicole Sevison RN, Haluk Altiok MD

be iNFormed Series

Learning Problems in Neurofibromatosis-1

NF Midwest | 2012
By Scott Hunter, PhD and James Tonsgard, MD

be iNFormed Series

NF1 Information for Teachers

NF Midwest w/BC NF Foundation | 2012

be iNFormed Series

Vascular Disease in Neurofibromatosis Type 1

NF Midwest | 2012
By Cynthia Hingtgen, MD, PhD

What should you know? People with neurofibromatosis type 1 (NF1) can have many…

be iNFormed Series

Pain in Neurofibromatosis 1

NF Midwest | 2013
By Staci Martin Peron, PhD and Andrea Baldwin, CRNP

be iNFormed Series

NF1 Gene Deletion

NF Midwest | 2014
By Heather Radtke, MS, CGC

be iNFormed Series

Insurance Coverage for Neurofibroma Removal

NF Midwest | 2015

be iNFormed Series

What to do if your personal physician doesn’t know a lot about NF?

NF Midwest | 2017
By Jason Marker, MD

We recently invited Dr. Jason Marker, a primary care physician, to share his…

be iNFormed Series

NF1 and Velopharyngeal Insufficiency

Department of Communication Sciences and Disorders, California State University, Sacramento By Kimberly Marrs, B.S., & Heather Thompson, Ph.D., CCC-SLP

be iNFormed Series

Brainstem Tumors in NF1

NF Midwest | 2018
By Robert Listernick, MD

be iNFormed Series

Procedure Codes for Removing a High Quantity of Neurofibromas

NF Midwest | 2016
By Multiple Contributors

Leading the Fight for Options in Treating Dermal Neurofibromas: NF Midwest gets new procedure codes…

be iNFormed Series

Gastrointestinal Tumors (GISTs) in NF1

NF Midwest | 2020
By James Tonsgard, MD

be iNFormed Series

Neurofibromas (What They are and Types of)

NF Midwest | 2015
By James Tonsgard, MD, University of Chicago

Tags: Tumors

be iNFormed Series

Malignant Peripheral Nerve Sheath Tumors (MPNSTs) in NF1

NF Midwest | 2020
By Andrea Gross, MD

be iNFormed Series

Medical Imaging for NF1: Radiation Exposure

By Allison Goetsch, MS, CGC

be iNFormed Series

What is Schwannomatosis?

NF Midwest

be iNFormed Series

Reproductive Options for People with NF1, NF2 and Schwannomatosis

Johns Hopkins University | 2012
By Amanda Bergner, MS CGC

People who themselves have been diagnosed with NF1, NF2 and schwannomatosis, or who…

Other Important Material

A Road Map to Better Care and a Healthier You

Center for Medicare and Medicaid Services | 2014

Welcome to Holland

www.emilyperlkingsley.com By Emily Perl Kingsley

be iNFormed Series

What Siblings Would Like Parents and Service Providers to Know

Sibling Support Project By Don Meyer

NF Type 1 and Cancer Risk and Screening

National Cancer Institute | 2021
By Sharon Reynolds

be iNFormed Series

Care Guidelines for Adults with NF Type 1

American College of Medical Genetics and Genomics | 2018

be iNFormed Series

Applying for Disability Benefits with Neurofibromatosis

NF Midwest By Ram Meyyappan

be iNFormed Series

2019 Health Supervision for Children With Neurofibromatosis Type 1

American Academy of Pediatrics | 2019

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

© 2024 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.

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

Be iNFormed Database

NF Midwest Database

Be iNFormed Resources

Non-Scientific Articles

Welcome to Holland

Congenital Pseudarthrosis of the Tibia/Fibula in Neurofibromatosis Type 1 (NF1)

Learning Problems in Neurofibromatosis-1

NF1 Information for Teachers

Vascular Disease in Neurofibromatosis Type 1

Pain in Neurofibromatosis 1

NF1 Gene Deletion

Insurance Coverage for Neurofibroma Removal

What to do if your personal physician doesn’t know a lot about NF?

NF1 and Velopharyngeal Insufficiency

Brainstem Tumors in NF1

Procedure Codes for Removing a High Quantity of Neurofibromas

Gastrointestinal Tumors (GISTs) in NF1

Neurofibromas (What They are and Types of)

Malignant Peripheral Nerve Sheath Tumors (MPNSTs) in NF1

Medical Imaging for NF1: Radiation Exposure

What is Schwannomatosis?

Reproductive Options for People with NF1, NF2 and Schwannomatosis

Other Important Material

A Road Map to Better Care and a Healthier You

Welcome to Holland

What Siblings Would Like Parents and Service Providers to Know

NF Type 1 and Cancer Risk and Screening

Care Guidelines for Adults with NF Type 1

Applying for Disability Benefits with Neurofibromatosis

2019 Health Supervision for Children With Neurofibromatosis Type 1

People Are Talking

Find NF Care

Be iNFormed

Community Support

Get the Latest NF News & Updates