Thank you for visiting my fundraising page for Illinois Neurofibromatosis Inc!

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

 

Gracie was diagnosed by her doctors with Neurofibromatosis Type 1 or "NF1" when she was just a few months old.

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. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births).  THERE IS NO KNOWN CURE.

NF is a progressive disease and can affect people very differently. There are mild cases in which people have very few (if any) complications, while others may experience any number of complications related to NF such as:  disfigurement; blindness; skeletal abnormalities, brain and spinal tumors; loss of limbs, learning and developmental disabilities. 

Our Gracie is a happy, loving,  and active 5 year old.  She has recently developed a couple of tumors in her neck that are right now not giving her any trouble, but we will continue to monitor closely.  In addition, Gracie has some other challenges that we are dealing with. She is speech delayed, and also has some developmental delays. She is currently working with speech, occupational and physical therapists to help her get where she needs to be. At this point it is hard to say what learning and/or physical challenges Gracie may be faced with as she gets older as this is a progressive disease. We are hopeful that her case is mild, but with the help of our family and friends- we will do whatever we can to help her and others with this disease.

Please help us fund research to find a cure.  Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

-The O'Donnell Family

 

 

 

See Gracie 2010 online.