Wednesday, February 5, 2014

Undies in the SNOW, to find a cure!!!

You know what sucks? Pants. 
You know what also sucks? Neurofibromatosis. 
Let's get rid of them both this February! 

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.
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.


 Anne and Steve Noble

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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