43 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

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“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
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“..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
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“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
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“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
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“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
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Lexington, KY – Community Conversation

Name: Lexington, KY – Community Conversation
Start: 2026-03-14T08:30:00-05:00
End: 2026-03-14T13:00:00-05:00
Location: Shriner Children’s Hospital

March 14 | 8:30 am – 1:00 pm GMT

Listen and learn together, with experts and each other.

The morning will include:

Continental breakfast and lunch
An ask me anything Q&A
Short educational session
Time to socialize and meet others

Professionals attending the event include:

Dr. Donita Lightner, MD – Pediatric Neuro-oncologist
Dr. Michael Hendricks, MD – Pediatric Neurologist
Kim Osborne – Patient Services
Alyssa Frye, PsyD – Clinical Psychologist, UKY
Catherine Garcia Stangherlin, MD – Adult Neurologist/Neuro-oncologist

Join us for a morning of learning and sharing at Shriners Children’s Hospital in Lexington, KY, on Saturday, March 14th. Experts from the University of Kentucky, including the team at the NF clinic there will be in had to share their professional knowledge. Equally important, we will share experiences with each other.

There will be some educational sessions, material to take home, awareness merchandise, and an Ask Me Anything Q&A. The morning will also include a continental breakfast and end with lunch.

Professionals Attending Include: Dr. Donita Lightner, MD – Pediatric Neuro-Oncologist; Dr. Michael Hendricks, MD – Pediatric Neurologist; Kim Osborne – Patient Services; Alyssa Frye, PsyD – Clinical Psychologist, UKY; Catherine Garcia Stangherlin, MD – Adult Neurologist / Neuro-Oncologist.