You know what sucks? Pants.
You know what also sucks? Neurofibromatosis.
Let's get rid of them both this February!
Donate here: www.hopecur.com/AnneNoble
On Valentine’s Day we will be running to raise
funds for medical research on Neurofibromatosis. That is the condition
that, in its most visible form, was seen when Pope Francis recently was
photographed embracing a man covered with hundreds of tumors.
Most Neurofibromatosis tumors are on the
inside and thus are less visible. We will be stripping to our skivvies and running around in the frigid
temps, all in an effort to raise funds for medical research to benefit
thousands of kids like Jack Burke.
Jack is the kind of kid that immediately
becomes your best friend - such a character, a great big brother and just happy
as can be. But Jack's journey is a tough one. He was diagnosed
with NF (Neurofibromatosis) at two-years-old and, along with other
tumors, he has a plexiform neurofibroma (a complex tumor) just behind his left eye.
And now, just this September, they discovered a new tumor on his brain stem
that needs immediate intervention. So, as you are reading this, he will have
started 15 months of chemotherapy. An 8-year-old going through chemo!
NO CHILD SHOULD HAVE TO GO THROUGH THIS, so we are
running in our undies in the freezing cold because we will do whatever it
takes, no matter how ridiculous, to help find a cure for NF!
We pray that through this we can touch others and show them the love of God. Others who have been affected from NF have already shown us that you can live fully and 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.
I (Anne)
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! We got
married in June 2013 and are enjoying newlywed life! We also do triathlons (in
full clothing), for the same cause, once it gets warmer!
In 2012, we raised over $10,000 for CTF. Your donation, whether it be $5 or $500, will provide critical funding
to the Children's Tumor Foundation and allow for clinical trials, treatments
and ultimately the cure we desperately need. It would be awful for this
economic turndown to interfere with Jack’s health, or the research needed to
find a cure for the thousands of others like him. A dollar per a mile [in a
marathon] would be $26.20. $10 per a mile would be $262.00.
We sincerely thank you, Jack thanks you, and the millions of families who will benefit from this effort thank you.
100% of donations go directly to the Children's Tumor Foundation.
We sincerely thank you, Jack thanks you, and the millions of families who will benefit from this effort thank you.
100% of donations go directly to the Children's Tumor Foundation.
Donating online using either of our below links is easy,
safe and secure.
CTF
is a 501(c)(3) non-profit organization rated 4-stars by Charity Navigator and
priding itself on spending 82.4% of its revenue on program expenses and less
than 8% on administrative costs.
Sincerely,
If you prefer to send a check, you may send
it to: The Children's Tumor Foundation
95 Pine Street, 16th Floor
New York, NY 10269-0711
Please
put the following on the memo line: A. / S. Noble – Cupid’s 2014
____________________________________________________________________________
If you are interested in contributing to this blog, which I began as a multi-author college literacy project, about "going many miles for NF," please contact me.
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