Testimonials

I would like to thank y'all for this information on NF1. My son just turned 4 in April and was just recently diagnosed with neurofibromatosis type one which I have never heard of until my step mother said something to me about the spots all over his body and the two eye surgery's he has had in the past. This information has taught me a lot on this. Now we are seeing an NF1 doctor in Louisville and I just wanted to thank y'all for this [website] it helped a lot.” - Andrea G

NF Midwest has already done so much for our family. They have been an amazing source of research, support and connections. NF Midwest was a large part of establishing the clinic we attend at the University of Chicago hospital; one of the best resources in the country. Please know that this organization will use your donation to do wonderful things for the families affected.” - Annie

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.” - Anonymous

I recently learned I have NF1 at the age of 29. Iam blown away with how fast these tumors are growing and haven't got a clue how to start, where to begin , or if I even want to know anymore [about] this . My heart is broken.... I took pride in my appearance and being a young female it's hard to explain to anyone that these are not warts or STDs. I just need help with excepting the reality of my condition, so thank you from the bottom of my heart for reminding me I'm not alone and giving 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 then I began with. So once again THANK YOU FOR CARING.” - Anonymous

I recieved the packet. I found it more helpful than I could have imagined. I wish I would have known about some of this stuff years ago. I thought I was very informed but I wasn't. Thank you very much for the information” - Becky - Loved the Packet

I received the packet yesterday. Thanks so much for sending it! I really enjoyed the information you guys sent in regard to learning problems, etc. As someone who works in that field, I would really like to complement you guys on the information provided. When it comes to seeking help at school and all, you guys were spot on! Thanks again.” - Benjamin

Thank you again for all your help just having our conversation this morning was so nice. Just being able to talk about NF and not have to explain it is so comforting. Thank you again.  - Carol” - Carol

NF Midwest has helped my daughter be able to have experiences in life because of their generosity. I give many thanks to the workers.” - dlynn76

As a physician, I was especially impressed by the interest, commitment, and support I saw in helping patients with neurofibromatosis.  I received many great questions that have pushed my curiosity even further. Please keep up the good work. – from a presenter” - Doctor at Symposium

NF Midwest is a tremendous organization that has made great strides in patient advocacy and supporting research over the years.  I have no doubt that NF Midwest C.A.R.E.S. will serve to further these goals.  Please let me know whatever I can do to help.” - Dr. R Listernick

Thanks to you and this organization, I see a day when this disease will be relegated to the “curable” section of the medical dictionary. Thanks to you and this organization, “someday” isn’t just an “someday” isn’t just an empty wish. It will happen.” - Gabriele

Thank you for all your efforts to end the struggles for people with NF. Thanks to you and this administration, you have made it possible for people with this disease to hold up their heads. I am encouraged yearly by the advances made to put an end to this disease that causes so much heartache. Thanks to you and this organization, people with NF, can say without shame or hesitation, what they have and what is being done.” - Gabriele

Thank YOU for all that you do for people with NF and their families! It brings tears to my eyes to see how much was raised for this cause.  My brother had NF which turned cancerous and he passed away February 10, 2011 after a not-so-easy life with NF. My sister and father also struggled with this disease, then cancer and passed away in 1991 and 2008 respectively. This was our first NF Walk and we look forward to next year's. We were impressed with the organization of the walk, the DJ, the food, the prize baskets, the facilities and of course all of the care that went into it. My remaining sister and I, and our families, are determined to help out in any way to help cure this disease or assist other families who have NF in their lives.  We look forward to raising more funds next year and dressing up our team! Our goal as a team is to raise a lot more money next year!” - Great Steps Comments from Jeannie

I just had to commend you on an amazing event yesterday. I have to admit, this whole fundraising experience has been extremely emotional for me. I've been focusing on NF and thereby losing sleep worrying about [my daughter's] future way more than I'd like to. To be honest, I was a little worried about attending the walk and getting more upset. I actually had the best time. It was such a fun, positive event. I felt like everyone had so much fun and it was a great thank you to all of our supporters. You all do such incredible work.  And the award for top-raising team...I was super excited to win the title and the plaque, I had no idea we'd get a bag full of awesome loot! Thanks so much for everything. A part of me wishes I had still never heard of NF, but since it's in my life to stay, I'm so glad that all of you are too. We are going on vacation next week and I'm taking the rest of the month off from NF, but later in the summer I have a group of amazing moms in my community ready to enlist and help me plan a local fundraiser.” - Great Steps Comments from Jen

It was so great meeting you! My team (myself included) had an absolute blast this year. Thank you so much for all your hard work. And we were able to get the pink out of our hair. It took me about two shampooings to return to my normal blonde :)” - Great Steps Comments from Katie

It's been the one place I truly can find help and hope for a better future.. This place is more like family than anything else.. they truly want to find a cure and unlike someplace (aka goodwill) the profits go where they need to be.. (like goodwill head people)... these people real care and out reach to help find the right sources a person need... we need more support and more help and need the recognition like any other non profit groups.. aka the cancer society . . Because even this diease has cancer among the people my mom and identical twin died from brain cancer.. NFL needs more donations to function and move forward so they can help more people.. I cannot say enough about the help and hope given here...” - Jean

Thank you very much [for the packet]! My 6 year old son was diagnosed with NF last fall. My 8 month old will have his first appointment at the NF clinic in July. We are very excited about the walk. We just finished a T-shirt fundraiser. I had never even heard of NF before he was diagnosed, so NF Midwest has been a wonderful resource for us. Thank you for all that you guys do!” - Jessica

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.” - jlicato

For my family, getting involved with NF Midwest and fundraising really helped us on so many levels.  We met other families who we could really relate to, our daughter met other kids with NF and we stayed informed and continued to learn about the disease. Also by fundraising, we knew we could help make a difference for the cause.  NF Midwest has been a true support to us over the years.” - Liz

NF Midwest has proven to be a great resource and support for us as we make our way through this maze.  They provided valuable information that we were able to share with our own families and friends. They were instrumental in helping to educate the teachers at [the] Elementary School where [my granddaughter] would be attending. When we held our bowling event last Saturday the local chapter was in attendance to share information and lend their support.” - Mary

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.” - Matt

We have been touched by the efforts of NF Midwest in making a difference in those who's lives have been affected with Neurofibromatosis.” - Michael

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.” - Michelle S

[Our family] is so thankful for all the support you have provided us. We are pleased to make a donation and look forward to making many more. This is our way of saying thank you for your dedication to helping families with NF. You are amazing people and we are so grateful you are a part of our life-long journey to fight NF!” - Monica

There are a lot of big corporate charities out there that talk about how much they help people, but when we were looking for answers we did not get the help from them.  It was NF Midwest that helped us.  So it is important to me to get the word out about NF and NF MIdwest so that no other family has to feel as alone as we were when we were searching for answers. WHY SHOULD YOU DONATE TO NF MIDWEST INSTEAD OF THE OTHER GUYS???? To me the answer is simple.  They care!  Sometimes in life companies or charities get so big that they forget about why they are doing anything to begin with, they forget about the people they are suppose to help.  Nf Midwest is NOT this way.   They are there for those affected by NF and for their families.  Sometimes in life bigger is not better.  Our family likes to say that "NF Midwest is Small enough to care...Big enough to make a difference"  And I am telling you that my family and others I know in my area that means a lot more then we could say.  So please consider helping us in our NF cause and donate to this walk and NF Midwest!” - Myshell

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.” - NFmom

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.” - Noelle

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” - Robin

NF Midwest is a wonderful resource for us right here. They raise funds for local research clinics. They provide excellent NF informational packets and web based educational programs so people with NF in their lives can learn about the newest medical information and research discoveries about NF. They organize many fun events throughout our area for adults, children, and families to enjoy, to meet others, to share their story, and find support through friendships made. NF Midwest, as a smaller more local foundation, can provide support in a more personal way that is also very important to our well-being and hope.” - Roxanne

I want to thank you again Diana Haberkamp. I would have simply gave up on trying to get some Insurance or some Financial Assistance. But I kept trying and It finally happened.” - Shenita

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.” - Sheri

NF Midwest is a great organization and was very helpful when we learned our son has NF. Prior to that, I didn't know what it was. It was nice finding a regional/local support group.” - Sheri

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.” - Stacey

Thanks for all that you do for NF.  You clearly work extremely hard for the cause and [we] will be forever grateful for that. Thank you!” - Sue

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.” - Susan C

I just wanted...tell you how fantastic the conference was on Saturday.  Every speaker was informative and interesting and I got tons of information and learned so much from every speaker.  It looked like you had a great turn out.  Thank you to all your staff and to you for putting on such a great day.” - Symposium Comments from Angela

Thanks again for directing the annual NF symposium.  Your hard work & dedication to the cause is really appreciated.  I stayed to the end and participated in the Lessons Learned/Focus Group.  I am So glad I did.  I learned so much & met amazing people who want to help my wife with her struggles w/ Schwannomatosis.  All of this wouldn't be possible without dedicated people like yourself who give so much to the cause.” - Symposium Comments from Brad

Just wanted to say Friday night and Saturday were very much worth the 301 miles we drove, and the best meeting we have attended anywhere considering our NF2 interests.  Of course doctors Marco Giovannani and Bradley Welling were responsible for the in depth knowledge and understandings we acquired.   And Matt Hay’s account of his Ironman achievement was an inspiration for all. Our thanks to all on your team who helped with the planning.” - Symposium Comments from Dorothy

We thought the symposium was really great. It was really informative and was great to meet other families. Thank you for specifically introducing us to the couple from Tinley Park. We also had a chance to talk with some of the doctors during the lunch period and that was really helpful as well.  …. … 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. …I also really liked the check presentations! How great to see the money/research going straight into the hands of the doctors.” - Symposium Comments from Sue

Thank you so much for the article.  I really appreciate both the call reaching out and the article about Legius. I have been so impressed with the friendliness and helpfulness of everyone I've spoken with at NF Midwest.  As you know, the unknown before and after a diagnosis can be scary.  Thanks for wanting to help our family through it.” - Taryn

Thank you for the nice packet. Our granddaughter is 5 months old and just diagnosed with NF1. We had never heard of this before. We appreciate the information to help us understand her condition. $20 donation is to help provide someone else with this excellent packet of info.” - Thank You For Nice Packet

Your organization seems to be right on target. Thank you especially for he business cards, I SAW YOU LOOKING..... the first time to actually get to pass one out should be classic....Keep up the good work at Midwest” - Tonya

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.” - twood00

NF Midwest has been a true blessing. My husband and my son have Neurofibromatosis . We didn't know who to talk to for 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 obstacles. As NF family we need to talk to people who have gone threw what we were, emotionally. Physical and financially . Without support of NF Midwest I don't know where we be now.” - writer #2