| I want to tell you a little bit about what’s been happening with our family these days and ask for your support. I especially want to share with you what’s going on with our daugter Gigi (a.k.a Savannah Grace Kast).
Gigi LOVES the color PINK (hence the text color)! In fact, she is like most little girls in so many ways – she loves to dance, loves to dress up, and loves a sugary treat (the girl would do anything for a bag of Skittles)! What makes Gigi so exceptional to our family is the challenges that the girl just continues to take in stride (she’s soooo much tougher then her dad)!
Gigi has been diagnosed with a disorder called Neurofibromatosis (NF1). People with NF1 have or are prone to developing tumors that grow on the nerves anywhere on or in the body. Fortunately, Gigi is a SUPER TROOPER (don’t be fooled by the pink)! In the 4 years since her birth she has coped heroically with the growing number of café-au-lait macules (flat, brown marks or spots on the skin), two broken tibias, adorable PINK bi-focals (estropia/cross-eyedness), iris Lisch nodules (small benign tumors on the eye), and now the most recent complication, deteriorating vision in her left eye as a result of a tumor called an optic glioma.
Although we have known about the NF since she was very young, it was January of this year that Bill and I first heard the words “brain tumor,” and that, really hit us hard. Like most parents would, we sought out all of the information that we could find. One of the most informative, resourceful, ambitious and pro-active organizations that we discovered was the Children’s Tumor Foundation (www.ctf.org). Their mission is to solve the puzzle of Neurofibromatosis through research. It was also through this organization that I learned how I could do more to help Gigi and others that are challenged by this disorder. I joined the NF Marathon Team, the team that is racing for NF research.
To get updates on Gigi,you can click on "GIGI'S PAGE",
and to check on fundraising progress, come back and visit this website, as we Run For Gigi!
All donations made go directly to The Children’s Tumor Foundation and are tax-deductible. If you do not feel comfortable donating online and would rather send a check, please make it out to the Children’s Tumor Foundation and send to the following address:
Children's Tumor Foundation
Attn: NF Marathon
95 Pine Street, 16th Floor
New York, NY 10005
**On your check, please make sure you note my runner ID: FP-2762-06.**
I feel the need to mention that this is all still very new to me, neurofibromatosis, running and fundraising. Having said that, I welcome you to share with others what I am learning by forwarding the site information along to your friends, families, and co-workers.
Many thanks,
Bill, Amy, and the crew (Cullen,Gigi,Hank, and Lily)
PS…. If you’re really into seeing some history in the making... join our whole crew in Cincinnati on May 7th where I WILL complete my first half marathon and better yet “PINK" pigs will fly! |
