Fall 2012
Dear __________YOU___________,
In this time of economic slow
down, everyone is affected in one way or another. My family has decided to
spend less on ourselves and to help others who are in need. If you are inclined
to do the same, please read on and allow me to ask for your help with a charity
that I believe in and trust that is having its own share of financial cut
backs.
The Children Tumor Foundation is
spending much time and money to fund medical research and care, towards the
goal to find a cure for Neurofibromatosis (NF). This debilitating genetic
condition has no known cure and affects
1:2,500 births. Individuals with NF can have tumors grow on any nerve ending in
their bodies, causing deafness, deformities, learning disabilities, blindness
and more. People with NF go through many medical procedures, surgeries, and
chemotherapy to help them cope with the pain and tumors.
Running and fundraising for the
Children's Tumor Foundation has been important for me, ever since I first
joined the NF Endurance Team, in the footsteps of my father who began in
2005. I ran my first full marathon with
the team in 2007. The team is like a family to me!
Our NF Hero is the child of a friend of mine-
we are running for him. Connor, is like any other 9-year-old boy. He loves his pets, using his computer,
watching TV and going to Boy Scouts. In
fact, he eventually plans on becoming an Eagle Scout before going to college to
study veterinarian medicine. But unlike most other 9-year-old boys, he struggles
with a disease called Neurofibromatosis. The first clue that anything was going
on was at age 1 it appeared he had a “lazy eye” and was diagnosed with a
juvenile cataract in his left eye. Just 6 months later, he had his first
surgery. Then, he had an MRI to ensure that there was nothing wrong. Nothing
showed up, so he was diagnosed with psuedotumor cerebri – That is, his body was
acting as if it had brain tumors.
As a result, Connor had to have several spinal taps at
a very young age. When he was 4, an MRI showed a meningioma. He had brain
surgery to remove this tumor, and it was fortunately found to be benign, then
the diagnosis of Neurofibromatosis type 2 was made. Soon after, he began
showing signs of facial paralysis on his right side, resulting in three more
surgeries between the age of 5 and 7. Because these tumors are on the brain and
spinal cord, it is impossible to remove them completely, and they grow back.
The tumor that was causing facial paralysis on his right side also affected his
ear bones , and he lost his hearing and soon after his eyesight, on that side.
He endured excruciating pain because of the pressure of the tumor on his eye
socket.
Finally, his family had to make the difficult decision
to remove his right eye. The tumor remains intact, though, so he can’t have a prosthetic
eye. Unfortunately, it can’t be removed- it encompasses his carotid arteries.
He has a tumor on his left side that is being closely watched, as well as
tumors on both auditory nerves, which is the hallmark of NF2, usually causing
deafness.
Connor is an extremely smart kid, but needs support
for seeing and hearing, in school. He continues to be strong and not let this
debilitating disorder bring him down. We pray that through this we can touch
others and show them the love of God. Others who have been disfigured from NF
have already shown us that you can live fully & with joy no matter what you
look like on the outside. Currently, there is no cure for NF2, though
promising medical trials are underway. With
your donations, we can change that.
As you may know, I have NF also.
I was diagnosed with Neurofibromatosis Type 2 at the age of seven. I have
undergone numerous surgeries. Although I become deaf, I consider myself to be
blessed with a milder case. I know many people who also have the disorder and
who are not able to run or ride a bike, due to physical impairments. I am also
blessed to have a very good Auditory Brainstem Implant and after much practice
I can have conversations and am even able to talk some on the phone again!
Regardless of having NF2, I'm
also the luckiest woman in the world, because I'm engaged to Mr. Steve Noble! We met in 2009,
through RIT's (Rochester Institute of Technology) Campus Crusade for Christ
Spring Break trip. He proposed to me last summer at the finish line of my first
triathlon, which was of Olympic distance. Despite that I have no functional
balance nerves, we went on to both complete a 70.3 Ironman Triathlon, a couple
months later. We plan to marry in June of 2013. I can hardly wait!! :-)
For my third
time and his first, we will be running in the New
York City Marathon,
to help raise funds for CTF. Two years
ago, I raised over $10,000 for the foundation. Can we do
it again?
A donation of any size is very MUCH appreciated. It would be awful for this
economic turndown to interfere with the research needed to find a cure for Connor and the thousands of
others like him.
To learn more about CTF or NF
please visit www.CTF.org. To give to CTF, Kintera.com is safe, easy and secure.
Your donation will help to find a cure come sooner - rather than later as 80
percent of the donations go directly to research. CTF is ranked a 4-star non-profit
by Charity Navigator.
Sincerely,
Anne
Shigley and Steve Noble
P.S. You can
also send a check to:
The
Children's Tumor Foundation
95 Pine
Street, 16th Floor
New York, NY
10269-0711
Please put
the following on the memo line: Shigley / Noble – NYC 2012
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