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| Katie's Team...still running! |
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We’re Still Running
With the help and support of our friends and family, we finished another RACE! Katie ran/walked her first ½ marathon! And Connie finished his first full…26.2 miles. We went to the desert – thinking it would be warm this time of year. We’re we wrong! At the start line it was 26 degrees. Locals from Phoenix were in shock! They all said “it’s never been this cold before.” But, we overcame the cold temps and ran on. Just like living with NF – you learn to deal with life as it comes. 
For those visiting this site…wondering what NF is or why we would choose to run 26.2 miles …we do it for our daughter Katie and the 100,000 other Americans who suffer from Neurofibromatosis (NF). When we run, we raise awareness of NF and hopefully – support for research & treatment of the disorder.
So what is Neurofibromatosis? It is a neurological disorder that occurs through either spontaneous mutation, or genetically. In Katie’s case, it was a spontaneous mutation. NF expresses itself in many different ways. People with NF1 either have or are prone to develop tumors that grow on nerves anywhere in the body. In addition, NF can also lead to a loss of vision and hearing, disfigurement, loss of limb, skeletal defects, and forms of cancer.
The other KEY FACTOR for our running is to raise awareness for NF! Many people have never heard of NF even though it is a COMMON disorder. It occurs in 1 out of 3,500 births and is more common that Cystic Fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs Disease COMBINED!
We are so blessed and thankful that Katie is doing well with her NF and only has mild complications. Living with NF causes Katie to have a yearly MRI of the brain and spine to keep an eye out for any worrisome spots. A concern for people with NF is that it can change or advance at any stage in life (quite rapidly at times).
Even though Katie is blessed by few complications of NF, others are far less fortunate. Participating in these marathons are great because we meet so many wonderful people; however, meeting these great people also causes considerable grief for us as we learn of their struggles. Many of our new friends have children who are going through chemo or radiation, or has a child who has lost a limb or endured countless surgeries. We know how blessed we are that Katie does not suffer like this and we want to do what we can to help those who do.
In order to help find a cure, we have to raise awareness and funds for research. The Children’s Tumor Foundation is the leading organization coordinating research for NF. There are many ways that you can help! Our team needs participants…walkers, runners, cheer/volunteers. Another way to help is to make a donation…all proceeds go towards solving the NF puzzle (research) and are tax deductible…not to mention the joy of knowing you are making us run!!! If you prefer to send a check by mail, you may do so by sending it to the Children’s Tumor Foundation, 95 Pine Street, 16th Floor, NY, NY 10005. Be sure to put Oslica in the memo line or our runner number VB 597-07.
We’d love to have you join our team! If you are interested, please send us a note; lesleyo@arbbs.net .
Thanks for your support! Connie, Lesley, Ren & Katie (our NF HERO!) |
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| Come join the fun! |
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Sorry.
Fundraising has ended.
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Total Donations: $7,916.00
Goal: $7,500
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