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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

41 Stories from Volunteers, Donors & Supporters

Becky65

Client Served

Rating: 5

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

Client Served

Rating: 5

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

Donor

Rating: 5

NF Midwest has done amazing things to raise money and spread awareness about NF.

Amanda Somerville S.

General Member of the Public

Rating: 5

NF Midwest has changed my life. They have made it so much easier to locate the I formation that I need to handle my disorder. They have connected me with resources that I didn't know existed. My quality of life was spiraling down, then I went to my first symposium they hosted. It was life changing for me. Not only that, but the community they have brought together with their Facebook group has also helped. They do it all, keep us up to date on trials, helps us find a local doctor, helps get local meetings. I was lost in my illness until I found them.

Mary G.2

General Member of the Public

Rating: 5

Wonderful people helping to give people hope with NF

Previous Stories

Client Served

Rating: 5

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

Pamela L W.

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

MIDwest has help my wife tremendously. NO one FIGHTS along no walks along. The journey that those with NF have is long and bumpy but they can be assured they have help from one another and a place to turn. Each year odd is learned! And my wife said this is not a text book disease because each person can have the same type tumor in same spot but can react different to it. I.E. Like some feel pain while others don't. We are out of the dark age and shouldn't stay focus on what is written because words are just that words but when your living and breathing life with NF it's totally different than those words written in a book. And that's why we like NF midwest. Please support and take to heart what it's like to suffer with this and not only one who has it but family and friends who are by their side!

1

Volunteer

Rating: 5

We became aware of NF Midwest 20 years ago when my daughter was first diagnosed with NF at age 2. It's been part of our lives ever since, providing help and support all along the way - from initially helping us understand the disorder and what to watch for at different ages/stages, to finding an NF specialist, to networking with other families, and perhaps most importantly, the life-long friends our daughter has made through the summer camp where she is now a counselor. Thank you NF Midwest!

Jean79

Client Served

Rating: 5

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

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

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

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

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

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.

Client Served

Rating: 5

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

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

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

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.

2 Sara 'Perry' F.

General Member of the Public

Rating: 4

Our daughter was diagnosed with NF when she was about 2 years old. We got integrated into the NF network by joining the NF Midwest website and Facebook page. We were able to be integrated into the NF community by joining a Great Steps walk for NF so our daughter could meet others just like her. We appreciate the knowledge, information, community and support that NF Midwest has created.

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