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NF affects more than 2,000,000 people around the world. Our goal is to raise awareness and get more than 1,000,000 people to like our page. Please help us by suggesting us to all your friends. With enough awareness we can find the cure!

Neurofibromatosis (NF) is a genetic disorder of the nervous system, which causes tumors to form on the nerves anywhere in the body at any time. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified. http://www.nfinc.org/ is a great website with lots of info.
I have it as well as my 3 yr old daughter, Mia. It affects each person differently and can be a quiet, non-bothersome disease and it can also be noticeable to peers, painful and life threatening. I was diagnosed with it at the age of 31 when my daughter was diagnosed. Her pediatrician noticed that she had several “birthmarks” and started asking us questions, he sent us to see a neurologist who diagnosed us both with NF1. Neither one of us have had any problems with the disease until the summer of ‘08. Mia started having some problems with her eye crossing inward, after many visits to the eye doctor and neurologist they decided to have Mia’s yearly MRI a little early “just to be safe”… on Sept 9, 2008 we took Mia to CHKD for her MRI. That day at 3pm, her neurologist called us and said that he needed to see us at 8:30AM the next day. We were petrified. We will never forget that day. This is the day that we learned that Mia has two brain tumors, Optic Gliomas, one on each optic nerve, the tumor is large enough that it is going into the chiasm, which is the area that the optic nerves go through that lead to the back of the brain. These tumors occur in less than 5% of NF kids, but usually are only present on one optic nerve. Since Mia has two and they have become so large that they are in the Chiasm. Mia had surgery on September 15th, 2008 to have a port-a-cath implanted in her chest. This is where Mia gets all of her chemo as well as meds or any other lab or test that requires an IV or a vein. We had a few problems here and there with the chemo drugs. The first one was a 66 week treatment plan and about half way through we found out that Mia was allergic to. We had to start over from day one and now we are on our third drug. Mia just recently had a follow up MRI and the tumors are stable, the goal of the chemo is to stabilize the tumors, so it is doing its job. Our lives have been turned upside down by this disease, not all in a bad way though. We have met some amazing people during this journey and we know we will meet many more, as this disease will follow us through life. I hope that in my lifetime a cure will be found for NF, I don’t want my child to suffer, or her children or anyone for that matter.

Please help me by supporting me as I run the Rock and Roll Half Marathon in honor of my very strong, full of life, amazing and wonderful daughter, Mia. I am not out to break any records, I don’t care about finishing first, I care about finding a cure for this disease. Join me in donating, as it may be YOUR dollar that finds the cure for Mia and I!

Mia vec odradjuje kemoterapije i ideja roditelja je da ce se informiranjem javnosti povecati sanse za pronalazanje lijeka