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.
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.
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.
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.
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.
A Great organization that is always up to date with their information. Very helpful, informative and a great supportive community.
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.
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...
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
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.
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.
I won a scholarship from NF Midwest before starting college, and I love hearing about their involvement and support for Neurofibromatosis.
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.
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.
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.
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.
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.
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.
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.