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.
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...
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.
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 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.
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.
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.
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
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