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
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This event has passed.

SamJam’s BBQ & Boogie

Name: SamJam’s BBQ & Boogie
Start: 2023-11-18T17:00:00-06:00
End: 2023-11-18T22:00:00-06:00
Location: The Rustic Venues

November 18, 2023 | 5:00 pm – 10:00 pm CST

The music and fun is in November this year! Support the ongoing efforts for NF research and support services for NF patients and their families!

Live music and dinner to benefit Neurofibromatosis (NF) featuring 2 bands, fantastic food from Fat Albert’s BBQ, Caribbean Cruise giveaway, silent auction, cash bar, and more!

5:00 pm: Doors Open

5:30-7:00 pm: Dinner

6:00 pm: As the Crowe Flies (The best of bluegrass)

8:00 pm: Voodoo Players (Mixtape of rock favorites)

SamJam is about a long journey for a man who wants to give back… and pay ahead. Sam Oswald underwent spinal fusion surgery when he was four years old.

Along with the months of recuperation from the surgery and learning to walk again, Sam also learned of the diagnosis that would follow him throughout his life—neurofibromatosis (NF). A funny-sounding affliction, but a neurological disorder that strikes 1 in every 2,500 people. While you may not have heard of NF, it affects more people than Muscular Dystrophy, Tay-Sachs, and Huntington’s disease combined.

Since that early age, Sam has had two brain tumors, shunt revisions, bone grafting on both legs, knee surgery, dermal tumor removal, and eye surgery. Just a few years ago, Sam completed two surgeries for a rare tumor in his leg, radiation, and chemotherapies, and is left with a lower leg that no longer functions.

More recently, Sam has undergone additional surgeries to remove a tumor in his chest and a recurrence of cancer in his leg.

Now, at 38 years old, Sam has much he could complain about, but you won’t hear it. Sam continues to lead a very positive life, live independently, and is a friend to everyone he meets. The years of treatment and courage would not be apparent to people first meeting Sam.

After all this, Sam thinks it’s time to give back… to thank those who have helped and supported him. He also wants to pay it forward so other patients with NF can get the assistance they need, research can continue, and the public can be more aware of this disorder that very well may strike someone you know. One of Sam’s passions is music of all kinds… and that, my friends, was the start of SamJam!

Thanks to our wonderful sponsors, supporters, and everyone who attended, we have been able to raise almost $80,000 for NF Midwest during the first eight SamJams! Join with us to the make SamJam 2023 even better!