43 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

Research Trials and Studies

Highlighted Research Trials and Studies

Go to CLINICALTRIALS.GOV for a more comprehenisive list of ongoing studies and trials.

Research Studies and Trials

NF1 Research Studies and Trials

Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients.

Stanford Ophthalmology, Children's hospital of Philadelphia and Gilbert Family Foundation | 2024

This study is seeking to learn how different eye tests and devices can…

My NF Guide Study

Massachusetts's General Hospital | 2024

If you or your child has NF1, and you don't go to an…

Neural Underpinnings of Attention in Children with NF1

University of Wisconsin-Milwaukee | 2023
By Dr. Bonnie Klein-Tasman

Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study-RECRUITING NOW.

Dana-Farber/Boston Children's | 2024

The Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study will determine whether a…

CLOSED:

Research Study To Understand Barriers To NF1 Care

Mass General Brigham | 2023

We want to learn more about your experiences looking for NF1 medical information…

Topical Gel study for Adults with NF1 & cNFs

NFlection Therapeutics | 2023

Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden in NF1

Ann & Robert H. Luries Childrens Hospital of Chicago | 2023
By Carlos Prada, MD

Recruiting NF1 individuals with known Plexiform Neurofibromas

CLOSED:

Natural History of Cutaneous Neurofibromas in people with NF1

John Hopkins Medicine | 2023
By Carlos Romo, MD

Children and teens 19 years and younger.Adults 40 years and over.

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

University of Wisconsin-Milwaukee | 2021
By Bonnie Klein-Tasman, PhD

NF2 Research Studies and Trials

Efficacy and Safety of REC-2282 in Patients With Progressive Neurofibromatosis Type 2 (NF2) Mutated Meningiomas (POPLAR-NF2)

Recursion Pharmaceuticals Inc.

This is a parallel-group, two-staged, Phase 2/3, randomized, multi-center study to investigate the…

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

SWN Research Studies and Trials

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

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

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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.

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

Research Trials and Studies

Research Studies and Trials

NF1 Research Studies and Trials

Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients.

My NF Guide Study

Neural Underpinnings of Attention in Children with NF1

Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study-RECRUITING NOW.

Research Study To Understand Barriers To NF1 Care

Topical Gel study for Adults with NF1 & cNFs

Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden in NF1

Natural History of Cutaneous Neurofibromas in people with NF1

Resilient Youth Study (age 12-17 NF or SWN)

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

NF2 Research Studies and Trials

Efficacy and Safety of REC-2282 in Patients With Progressive Neurofibromatosis Type 2 (NF2) Mutated Meningiomas (POPLAR-NF2)

Resilient Youth Study (age 12-17 NF or SWN)

SWN Research Studies and Trials

Resilient Youth Study (age 12-17 NF or SWN)

People Are Talking

Find NF Care

Be iNFormed

Community Support

Get the Latest NF News & Updates