All Recordings - Neurofibromatosis Midwest

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

Educational Recordings

Recording

Managing Neurofibromatosis Type 1 Related Plexiform Neurofibroma in Patients of Different Ages

NeurologyLife | 2024
By Dr. Kaleb Yohay, NYU Langone Health

NF1 Brain Tumors

NF iNFo Fair Recording | 2021
By Dr. Virginia Harrod

Tags: optic pathway, gliomas, brainstem, intraspinal

NF1: Other Complications & Concerns

NF iNFo Fair Recording | 2021
By Carlos Romo, MD and Anna Piotrowski, MD

Tags: pheochromocytomas, GISTs, blood pressure, depression

Cutaneous Neurofibromas (Skin Tumors)

NF iNFo Fair Recording | 2021
By Dr. Lu Le

Tags: fibromas, treatment, excision, laser, electrodessication

Malignant Peripheral Nerve Sheath Tumors (MPNSTs)

NF iNFo Fair Recording | 2021
By Dr. AeRang Kim

Tags: treatments, trials, sarcoma, cancer

Plexiform Neurofibromas

NF iNFo Fair Recording | 2021
By Dr. Amy Armstrong

Tags: tumors, NF1, treatments, trials

Advocacy For Federal Funding

NF iNFo Fair Recording | 2021
By Gillian Payne, The Littlest Tumor Foundation

Tags: lobbying, CDMRP, NIH, advocacy

Understanding NF1 vs. NF2 vs. Schwannomatosis

NF iNFo Fair Recording | 2021
By Miriam Bornhorst, MD

Overview of the types of NF.

Neurofibromas and Other Tumors

NF iNFo Fair Recording | 2021
By Dr. Steven Rhodes

Tags: NF1, plexiform

Other Medical Issues in Children with NF1

NF iNFo Fair Recording | 2021
By Dr. Donald Basel

Tags: fibromas, nevus anemicus, juvenile xanthogranuloma, pruitis, itchiness, choroidal freckling, retinal, bones

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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.