2019 Top-Rated Nonprofit

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.

Community Stories

33 Stories from Volunteers, Donors & Supporters

Tucker345 Client Served

Rating: 5

10/30/2023

We first came to know NF Midwest when my son was very young, and they continue to be relevant as he’s grown into adulthood. Their personal touch is refreshing and their education is invaluable!

1

Writer Client Served

Rating: 5

10/29/2023

Without NF Midwest I wouldn’t know of anyone else that had or even knew had NF or anything about it. Thanks NF MIDWEST. They have symposiums each year for more information and get to know the doctors and researchers.

Previous Stories

General Member of the Public

Rating: 5

10/18/2016

NF Midwest has been a true blessing. My husband and my son have Neurofibromatosis .
We didn't know who to talk to, doctors and support.
My husband has NF 1, he is a Veteran . And goes to VA hospital. Our son has NF 1. He has had to have surgeries to remove fibros . We have run into many obsticals.
As NF family we need to talk to people who have gone threw what we where, emotionally. Physical and financially .
Without Support of NF Midwest
I don't know where we be now.

1

ashleemoore22 Client Served

Rating: 5

10/28/2023

NF Midwest gives out free resources to help awareness within the community!

nf1mom Client Served

Rating: 5

10/30/2020

NF Midwest has been a blessing to our family. They provide a wealth of information and support and truly strive to offer personalized information.

1

jlicato Client Served

Rating: 5

10/30/2019

NF Midwest has been invaluable as my family navigates life with a child with NF. They provide resources and education, offer opportunities to meet other families facing this disorder, and work alongside us to spread awareness and raise funds for better treatments. Don’t know what we’d do without them!

Previous Stories
1

Client Served

Rating: 5

10/12/2016

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.

1

Erik G. Client Served

Rating: 5

10/30/2019

NF midwest helped me with a scholarship at the beginning of my collegiate career which helped immensely. Further, they introduced me to the lobbying process which further develop my professional skills.

laurahaslam29 Client Served

Rating: 5

10/29/2019

NF Midwest is an amazing organization that has created a great, loving, supportive, fun, and inspiring community. They empower and care for so many and we are grateful for all they have done for us!

kdonahueralston1671 Client Served

Rating: 5

10/29/2019

I don’t know what I would have done when my daughter received her NF diagnosis if it had not been for NF Midwest. In the whirlwind that is a brain tumor growing apparently out of control, doctors not having experience with her genetic disorder, and decisions needing to be made quickly by her equally inexperienced mother and father in steps NF west to the rescue.

The people at MF Midwest have been there at those scary times for my daughter, my family and anyone needing help navigating the complex genetic landscape that is Neurofibromatosis.

For 11 years now NF Midwest has been our best source for learning about our daughter’s genetic disorder, finding doctors for her rare condition, getting information about research studies she can be a part of.

And that’s just the start of the good work done by NF Midwest. NFM has made it possible for kids with NF to attend summer camp with children who also have NF. What an amazing thing for a child to not feel different for a while.

My daughter was given a scholarship to help pay for college by NFM.

NFM creates a community of support and help for all of us families to help us feel that we are not in this alone. Whoever can make it participates in an annual fundraising walk each June in Naperville, IL. This is one of many fundraisers that NFM supports and advertises in their newsletter and on their website.

Put simply, I don’t know what we would have done when hit with such a challenging diagnosis as NF had it not been for Diana Haberkamp and NF Midwest. Kathleen Ralston

bellaj23 Client Served

Rating: 5

10/29/2019

Having NF myself I never knew more than myself having NF since I've been apart of the NF Midwest community (for over 10 years) I grown stronger because of this big, powerful and supportive community. Neurofibromatosis Midwest is one of my greatest resources and ally. I can't wait to see the amazing things this organization does in the future!

Amanda E.5 Client Served

Rating: 5

10/29/2019

Incredibly supportive and provided so much great info after myself and my daughter were diagnosed. We have been so much more at ease with this disorder with all their support

phoward12 Client Served

Rating: 5

10/29/2019

NF Midwest has been an amazing organization that has gone above and beyond to help our family and son learn about NF. We are very thankful for their time and effort answering questions that we have about the disorder. They help us to see that we are not alone in this battle to END NF!

Becky65 Client Served

Rating: 5

11/03/2018

This organization is wonderful. They have helped me get information and have called me several times to check on me personally

Writer Client Served

Rating: 5

10/29/2018

NF Midwest gave out the best informative packet I have ever received. I wish I lived closer to participate in events.

Mary G.2 General Member of the Public

Rating: 5

10/29/2018

Wonderful people helping to give people hope with NF

Previous Stories

Client Served

Rating: 5

11/02/2017

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

Pamela L W. Client Served

Rating: 5

10/29/2018

NF Midwest has been very helpful to us. They have a wealth of knowledge available to families who deal with NF. We found a doctor that is very knowledgable about NF. It is worth the drive of 150 miles to see him twice a year. They also put on a symposium once a year. So much information is given out at these also. We love going. Anyone with NF or a family member with NF needs to use their resources. You are missing out if you don’t use them.

Jean79 Client Served

Rating: 5

10/27/2018

Midwest ND has been such a wonderful help and change in my life and changed the course of my thinking.. I feel better about myself and NF does define who I am it's just part of what I carry with me. The support is there.

Previous Stories

General Member of the Public

Rating: 5

10/29/2017

I'm not alone! I'm not hidden behind closed doors. Doctors take me serious now about my pain and aches! I can now talk about my neurofibromatosis and not be told "live with it". I have others to talk to now about my fears and anxiety. I have a doctor to go to who has been train specifically to deal with my NF. And he is genuine in his concern to help me and others who suffer with NF. Its not in my head. It can now be seen on MRI'S. I'm not alone. There's a whole community I can turn to. Thank you for this website. Thank you for I'm no longer alone.

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Laura H.8 Client Served

Rating: 5

10/26/2018

Wonderful people fighting for an important cause! They have directly provided support to my family and countless others.

Stacey Lynn S. Client Served

Rating: 5

10/26/2018

NF Midwest has helped me greatly. Not only do they bring people together and form a great sense of community, they also provide so many resources and information. They provide information on medical breakthroughs, doctors, Procedures, and even medical coding and billing information.
NF Midwest is by far one of the greatest resources out there for people living with Neurofibromatosis.

Previous Stories

Client Served

Rating: 5

10/19/2016

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.

Laura A.3 Client Served

Rating: 5

10/26/2018

My husband ( Richard Allsop )and my son ( Jason Allsop ) have NF 1.
Neurofibromatosis Midwest has been great support. We don’t feel alone, we have met many families with NF. Gone to Symposium to help educate ourselves about NF. Spoke with doctors who know NF.

Maitri Client Served

Rating: 5

10/26/2018

This organization educates and advocates like most do...and also supports families facing the challenges with a loved one with NF. Met the organization at a trade show. Introduced myself as an aunt of an 8 year old recently diagnosed. The executive director compassionately answered all my questions and settled my fears. Getting information only from doctors and online is not enough. The real life examples, first hand experiences and loving support makes all the difference. The NF Midwest Facebook page, emails, newsletter and most importantly the live fundraising events allow the community to interact in a very personal level. This organization is making an impact on research, public education, legislation, funding and family support...all pieces are integral to success!

Erin Mayfield C. Client Served

Rating: 5

09/06/2018

Great resource for us when our daughter was awaiting a rule out or diagnosis. Very understanding staff that followed up with us and cared about us in a very difficult time.

Doreen H. Client Served

Rating: 5

10/30/2017

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.

1

SMMullis Client Served

Rating: 5

10/29/2017

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.

cubsfan4life Client Served

Rating: 5

10/29/2017

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

10/29/2017

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

Writer Client Served

Rating: 5

10/28/2017

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

10/17/2017

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.

Writer Client Served

Rating: 5

10/10/2017

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

crockers Client Served

Rating: 5

10/02/2017

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.

dlynn76 Client Served

Rating: 5

10/11/2016

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

twood00 Client Served

Rating: 5

10/10/2016

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.

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