Neurofibromatosis (NF) is a genetic disease that affects nearly 1 in 3,000 births. My good friend, Kari, has a six-year old son, Connor, who was diagnosed with NF at the age of 1. Currently his symptoms include NF related scoliosis and a plexiform tumor on his spine. NF can also lead to learning disabilities, deafness, blindness, and a host of other complications.
NF has impacted our family because my cousin Carly was diagnosed with NF at the age of 18 months. She struggled with multiple surgeries and other NF related issues her entire life, until at the young age of 18, she was diagnosed with NF sarcoma, the first of its kind, which eventually took her life one year later. My uncle Scott has written an incredible book about his family's journey through NF and cancer. It is a book that will change your outlook on life!
The NF Endurance Team is raising money for NF research. Any contribution helps. Please consider making a contribution to help Connor and his fight against NF, and in memory of my cousin, Carly.
The following link allows you to make a donation online.
http://www.active.com/donate/nfraceforresearch09/KHarris420
Some of the team members were interviewed by a local newspaper!
Thank you for helping to make a difference in the lives of children and families with NF!
6 comments:
Thanks to you Hil... and to all of those on the Endurance Team as well !
Thank you all for trying to make a difference in the lives of many ....
Thank you for "being there" for me and for all of us during that time when Carly was fighting for her life.
Thank you for not forgetting about her some 5 years later..letting her life and story.. still touch the lives of others.
MAY the LORD BLESS YOU !!
I LOVE YOU
scott
Thank you Hilary for being so supportive. You have always been so willing to come out and raise awareness for NF. Even if it meant challenging yourself at something you have not done before.
Now you are helping so many by working towards treatments and hopefully a cure.
You are an incredible friend who has been there for the highs and lows of this disease. I hope you always know how important you are to our family!
Thank you Hilary!!!!
One week to go! What a wonderful thing you are doing!
It's hard to believe it's here already. I'm proud to be a part of a 14 member NF team - we'll definitely be visable that day and I hope we bring some awareness about the disease.
I am so proud of you, Hilary!! You have been a "real trooper" in getting ready for this event! My thoughts will be with you on Saturday!
It is here! Can't wait! Very excited!
See you tomorrow!
Thanks for making a difference!
Kari
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