I will be running in my undies this February, all in an effort to raise funds to find a cure for Neurofibromatosis (as known as NF), a disorder that causes tumors to grow on nerve endings in the body. Each day can bring a new and terrible challenge to the patient faced with NF. Complications with NF can lead to disfigurement, blindness, bone deformity, loss of limbs, learning disorders, deafness and even death, to name a few.
After meeting a very special little guy named Jack Burke, we were very inspired to help with finding a cure. Here is is his story.
When Jack was 2 years old, he was diagnosed with NF1 (Neurofibromatosis Type 1). As his family, we were completely shocked at the diagnosis; we had never heard of NF1 and were devastated to find out the difficulties he would likely face in the future.
At 6 years old, Jack had his first surgery as a result of NF. He had a "debulking" of a tumor in his left orbital area. It was not entirely removed because it could not be, but it did help his vision. In September 2013 he was diagnosed with a glioma (tumor) on his brainstem and subsequently had to endure 52 WEEKS of chemotherapy in the attempt to shrink his tumor. This October 2015, Jack had to have brain surgery as a result of complications from NF.
Like most kids with NF, Jack faces his challenges with a smile and determination and finds a way to live life to the fullest. Through CureNFwithJack founded in 2011, Jack has raised awareness through many events including golf tournaments, garage sales and lemonade stands. He is determined to beat NF so that he and others will see a cure soon. In 2013, Jack's Boston team and all of his teams combined nationwide, shattered previous fundraising efforts for Cupid's Undie Run. He thinks the trophy is pretty cool and is making room for another one in his bedroom!
Donate or join our team of undie-clad runners. Your donation will provide critical funding for the research that will ultimately enable a cure.
Together, we can be the difference in the lives of children like Jack and help #endNF #CureNFwithJack
No person should have to go through this, so I am running in my undies in the freezing cold because I will do whatever it takes, no matter how ridiculous, to help find a cure!
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.
I sincerely thank you, the kids thank you, and the millions of families who will benefit from this effort thank you.