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Neurofibromatosis Midwest

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Nonprofit Overview

Causes: Health, Neurology & Neuroscience Research

Mission: NF Midwest is committed to improving the lives of children, adults, and families impacted by neurofibromatosis. Our continued focus and foundation is on Clinics, Awareness, Research, Education and Support in the states of Illinois, Indiana, Iowa, Kentucky, Wisconsin, and the eastern half of Missouri.

Results: We are able to fund vital research and clinical trials. Also, approximately 12-14 kids get to attend Camp New Friends for one week in the summer.

Target demographics: All races and ages and both genders.

Geographic areas served: Families affected by neurofibromatosis living in Illinois, Wisconsin, Indiana, Iowa, Kentucky and Eastern Missouri

Programs: Annual Family Symposium, Ask the Doctor Sessions, Local Chapters, and Camp New Friends

Community Stories

13 Stories from Volunteers, Donors & Supporters

Mary G.2

Client Served

Rating: 5

A great place with with wonderful kind compassionate people very knowledgeable with information

Doreen H.

Client Served

Rating: 5

NF Midwest has been a resourceful piece of information at various times. Pamphlets and more for schools & doctors. Plus they helped fund my daughters way to NF camp. Without their notifying us it existed & paying her scholarship to attend, my daughter would have missed this wonderful opportunity. She has attended 2 yrs with their help.

Client Served

Rating: 5

This is one of the best organization. They have been a great help to me. Sending information to me for school and for helping me to educate Dr. about this disease. Could not have made this progress without there help.

Client Served

Rating: 5

NF Midwest has helped me spread awareness through fundraising opportunities, allowing me to speak at events, and even encouraging me to write an article published in a local newspaper. Thanks to NF Midwest, more and more people are learning about one of the most common genetic disorders.

Kathryn W.1

Client Served

Rating: 5

A Great organization that is always up to date with their information. Very helpful, informative and a great supportive community.

Client Served

Rating: 5

I was diagnosed in 2015 at 42 yrs old. My "excitement" for finally having a reason for some things was quickly followed by serious disappointment in finding a doctor who is knowledgeable.
Thanks to NF Midwest I am learning

Brian P.1

Client Served

Rating: 5

They have been a great sourceof information and support. My son has NF1 and the group has been there when we need help. The work on getting the word out about NF, fundraising for research and scholarships for kids to go on to college.

Client Served

Rating: 5

I won a scholarship from NF Midwest before starting college, and I love hearing about their involvement and support for Neurofibromatosis.

Client Served

Rating: 5

NF Midwest has been a blessing to our family. My daughter and son have both been diagnosed with NF1. They have offered acceptance and understanding. They provide up to date information regarding issues that we face. They provided information that helped us talk to the school and get the support the kids needed. Thanks for everything.

Stacey Lynn S.

Client Served

Rating: 5

NF Midwest is an amazing group full of support, information and most importantly, acceptance and understanding.
They do so much to promote awareness about Neurofibromatosis, and provide support to families that don't know what to do, or where to go when they are given the diagnosis.

Client Served

Rating: 5

4 years ago, my daughter was diagnosed with Neurofibromatosis at the age of 4 months. I had never heard of it. I was given a brochure for NF Midwest from her doctor and I signed up for their symposium. Shortly thereafter, I received a call from the Director, Diana. She let me know that her husband and two children have NF as well. She asked if I had any questions, and let me know that they were there for us. I had just received shocking, frightening news about my infant child. I didn't know where to turn, and suddenly I had a place to go for answers and help. NF Midwest has been there for my family every step of the way. We are so grateful for the work they do, and proud to support it.

Client Served

Rating: 5

NF Midwest has helped my daughter be able to have experiences in life because of their generosity. I give many thanks to the workers.

Client Served

Rating: 5

NF midwest is a wonderful organization. When my son was diagnosed, they gave me more information than any doctors ever did. 5 years later, I still look to them for help.