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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

62 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

The organizers and volunteers are deeply caring and motivated to help others dealing with the vast symptoms and problems that arise with the presence of NF. Education is a priority to help people understand and become their own advocates.

Kelly E.4

General Member of the Public

Rating: 5

NF Midwest has done wonderful things for my nephew and our entire family. This is a scary disease and there is a lot still unknown but NF Midwest has held our hands through the entire process since prior to diagnosis and still continue to support us all.

General Member of the Public

Rating: 5

NF Midwest gave me a much needed scholarship for school, thank you so much!

Donor

Rating: 5

My son, Jay, was diagnosed with NF1. Before his diagnosis my wife set up an appointment with a dermatologist. We were immediately directed to speak with a neurologist, that same day. After talking with the neurologist, who was extremely helpful and reassuring, he recommended that we going a support group. The one he recommended specifically was NF Midwest. Since our family has become a part of the NF Midwest family it has felt just like that, a family. They have been there for support, advice, and hosting events that help take ones mind off of the several daily stresses that comes with NF. My wife has attended a symposium that NF Midwest hosts. I will be attending my first one this year. This organization means so much to so many people, my family included.

Client Served

Rating: 5

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

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.

Volunteer

Rating: 5

NF MIDWEST has always been a place where I grew up. I have NF and I have always felt welcome and safe being apart of this community.

Erik G.

Client Served

Rating: 5

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.

Donor

Rating: 5

My grandson was diagnosed with NF1 last year. I, of course, did all the things that the doctors tell you not to do and researched it myself. Initially, I was distraught by viewing the images of people who have the disease. However, one site I came across was NF Midwest which calmly explained the disease and gave me a feeling that there was a great deal of hope in treating and possibly eliminating this disease. I have participated in the Great Step NF Walks and met other people going through the same experience. I have attended other NF Midwest events. I know NF Midwest have seminars where recent developments and treatment of NF are discussed as well as related sibling issues. I plan to attend one these seminars in early November. However, the best thing I like about NF Midwest is that it gives support and information to my daughter and son-in-law. They are very enthusiastic about their support for NF Midwest and it helps them with the care of my grandson. John Wasilewski

Volunteer

Rating: 5

A very dedicated group providing information on resources available to help those families in need.

The events they host not only generate funds to help understand NF and lead to a cure...better quality of life, they also bring this community together for a fun experience.

Donor

Rating: 5

What an amazing event to raise money and awareness for NF. The Midwest event is very well organized with extra things to do for all ages. The actual walking path is beautiful & accessible for everyone. We enjoyed an awesome day with family & friends especially the HEART of our participation... Baby Jay! Bless ALL the faces of NF. We are counting down to next years walk!

Client Served

Rating: 5

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!

Volunteer

Rating: 5

When My son was first diagnosed, they were there to answer questions and give me a support system. They are always willing to answer your questions and give you recommendations.

Client Served

Rating: 5

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

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

They have truly changed our lives. Our son is the first in our family to be diagnosed. We were lost and knew no one who could help or relate. Finding NF Midwest was like finding our tribe. Not only to we now have a community to share with, but they genuinely care. No matter how many families are involved they always remember our son personally. It’s like a family. They are truly a gift from God.

Volunteer

Rating: 5

I have been associated with NF Midwest for about 10 years, as the Volunteer Event Coordinator for the Great Steps 4 NF - Madison walk, although it is a lot of work putting the event together it is also rewarding watching those in attendance as we help to bring awareness, and education about Neurofibromatosis to the general public. NF Midwest also host a symposium each year to help educate.

Amanda E.5

Client Served

Rating: 5

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

Client Served

Rating: 5

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!

Volunteer

Rating: 5

My daughter was diagnosed with NF Type 1 last year. NF Midwest has been a great support system for myself and my family. They make me feel empowered to fight the genetic disorder, keep me informed up upcoming events, and give me the chance to donate my time to benefit the organization. They are great with creating newsletters, symposiums to educate and get people together, and are overall friendly and caring. I greatly appreciate NF Midwest and look forward to working with them in the future.

General Member of the Public

Rating: 5

Greta organization to assist families that have a child with NF.. Also works to fund needed research through fundraising and donations.

Hard workers in the office and on the board all to help kids.

Christina T.3

Volunteer

Rating: 5

NF Midwest is an awesome nonprofit organization that has helped several people in Mid Missouri get connected with one another in addition to helping with a Great Steps 4NF walk in Central Missouri.

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

Stephanie B.2

Volunteer

Rating: 5

Having this "group" to read up on as well as ask for their knowledge adds strength to putting up with NF2! I look for to the walk each year now too

1 Jessica S.1

General Member of the Public

Rating: 5

Are story is are daughter was diagnosed at three months old due to cafe-cals showing up. Are first year with the diagnosis with NF1 we basically had no idea what we where dealing with except what we where told or looked up. In prosses of looking things up I found that their was a walk-thon for NF near us. I signed up for the walk and got a phone call about a week later it was Diana form NF mid weast an I missed the call but called her back once we finally got connected I told her about are daughter. Just a few things that she has on her problem list are: Glioma of orbital part of optic nerve of right eye, VSD, ASD secundum(had open heart surgery for ASD),failed hearing(had tubes put in both ears),congenital ptosis of right eyelid, developmental delays, headaches,possible sensory disorder, nonintractable epilepsy with complex partial seizures, and has a g-tube due for failure to thrive. These are a few of her major issues that we deal with. But since we found NF Midwest we have found a doctor that deals with NF children primarily and have meet many other people with NF or know someone that has it. If we have a question about are daughter we can ask and never have we had any problems with anyone we have meet.

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.

General Member of the Public

Rating: 5

NF Midwest has been a help to me since I was 10 years old. I've been to many events over the years and have learned a lot about Neurofibromatosis and how I can live through it. Now at 23 in college,using the scholarship I wa granted, I plan to help others with NF and spread more awareness.

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.

Donor

Rating: 5

They always keep the NF community up to date with all the newest procedures and tests relating to NF and the problems it causes. Whenever we need information they are my first resource on how to get what i need for my family.

General Member of the Public

Rating: 5

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.

General Member of the Public

Rating: 5

I love NF Midwest. Ever since I discovered them they have helped us so much. I have learned so much from the ladies here and they are more then willing to help everybody.

General Member of the Public

Rating: 5

This is an amazing charity, it helps people with Neurofibromatosis (NF) connect with each other and raise money to research NF to help find a cure.

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.

General Member of the Public

Rating: 5

This organization has been instrumental in spreading awareness and raising funds for those in the Midwest that suffer from Neurofibromatosis. They truly care about finding a cure. They are supportive not only to those that have NF, but their families as well. It is where my family first turned to when I was little to get the information they so greatly needed.

General Member of the Public

Rating: 5

We felt alone in the world when our son was diagnosed with NF1. NF Midwest reached out to us. With the help of this organization we have learned so much and made a lot of new friends

Robin163

General Member of the Public

Rating: 5

im in kentucky , when they said my son tested positive for nf1 i was lost and didnt know where to turn , had very little info on what to do next or who to even talk to on how to help my child . they sent me an info kit that was very well organized and called me without asking to guide me and just give me pointers etc , thank you so much

1

Volunteer

Rating: 5

Today I had the chance to get together with a friend that I haven't seen in quite some time, and we managed to talk for three hours about our boys, ages 9 and 12, both with NF1. On my way home, I thought about how blessed I have been and the blessing that has been NF Midwest.
My family's lives have been tremendously impacted by the NF Midwest family.  That's truly what they have become to us-family.  Earlier this spring, we had the opportunity to go to the NF Midwest office in St. Charles, IL.  I'm not quite sure what I expected, but there were only three people running this organization that serves NF families in six states! Little did I realize that this visit would lead to the biggest adventure in all of my son 9 years, as he got to go to NF camp in Virginia. Not a day goes by since he came home that camp isn't mentioned. Even more remarkable than that is that those campers’ experiences were made possible by people who just want to make a difference. Making positive differences in the lives of people with NF is ultimately what NF Midwest represents to me. Of course, their contributions to research are extraordinary, and our family has seen first-hand how wonderful camp can be, but I am just as moved when I see a simple message from the staff at NF Midwest offering thoughts and support for someone who is scared and anxious about a test result.    
The uncertainties of NF can be too much for people to bear and can leave them feeling powerless (yes, I am speaking from personal experience). Our participation in NF Midwest has helped us take some of that power back, and has given us hope.