Those of you that know me best know that I don't always think things through before I act. Usually my heart overrides my brain and I find myself in unusual situations. Such was the case when I first signed up for the NF marathon team. I wasn't a runner; as a matter of fact I couldn't even run one mile at the time. The only thing that I knew for certain was that I wanted to help my cousin Shannon who was suffering from a condition that has no cure. With her as my motivation I felt that I could do anything!

A few months later I had reached my fundraising goal and found myself on a plane heading to Orlando to run the Disney marathon. Come race day Shannon was there, waiting at the finish line, smiling from ear to ear. Her presence seemed to have been pulling me forward like a magnet. Failure was not even an option but I hit "the wall" hard at mile 18. Fortunately for me, I met someone very special just then who has since become a great friend. That person is Julie Varchetti. She selflessly made time for me and we talked about my cousin and why I was running. Julie helped me refocus, get back in the race, and carry on. It wasn't pretty :) but I finished for Shannon and everyone with NF. She reminded me that the aches and pains that I felt couldn't even compare to what Shannon was going though every day.

Since that first event, I have raised funds and run many NF team events for the Children's Tumor Foundation, most recently was in June 2010 at the San Diego marathon. I have met many wonderful and inspiring people along the way and I can tell you that this experience has been a life changing event for me. I know it sounds funny but I still do not like to run. I do however feel truly honored to be able to take an "active" role in the search for the cure. I can't wait for my next event because this has been the ONLY thing that starts to take away that helpless feeling that we get while we watch our loved ones struggle with NF. It doesn't matter how fast we run or what kind of medal we're going to get. We are all out there for one reason, to find the cure. Our team is growing every day and we will keep pushing the research until that cure is found.

RECENTLY MY FRIENDS AND I DECIDED THAT WE WOULD RETURN TO DISNEY FOR 2011. REMEMBER THE FRIEND I MENTIONED THAT I MET AT MILE 18? JULIE AND HER HUSBAND PAUL WILL ALSO BE RUNNING WITH US. THEY HAVE BEEN A CONSTANT SOURCE OF INSPIRATION AND MOTIVATION FOR ME SO I'VE DECIDED TO RUN BOTH THE FULL (26.2 miles) and THE HALF (13.1) MARATHONS (back to back) at Walt Disney World on JANUARY 8th and 9th 2011 IN THEIR HONOR.

I promise to TRAIN HARD and COMPLETE this extremely challenging 39.3-mile journey. I'd like to ask for your help... Please consider sponsoring me so I can reach my fundraising goal of $10,000 and help my cousin. If you can, please click the link at the top of this page and sponsor me today. All donations are 100% tax-deductible and every dollar brings us one step closer to that cure.

Why I chose CTF: The Children’s Tumor Foundation is a non-profit 501(c)(3) medical foundation that is dedicated to improving the lives of people affected by neurofibromatosis(NF). My cousin Shannon participates in studies and clinical trials that are funded by this organization. They have connected her with the best surgeons in the world who make use of this cutting edge research. Shannon struggles with many complications of NF including multiple brain stem tumors. Currently there is no cure or effective treatment but I believe that one will be developed through the work of this organization. Thank You for joining me in support of their efforts – Darryl Chene

You can easily use your Debit or Credit Card right here on this secure site by clicking the Make a Contribution Box on this page (top right). If you prefer, you can mail a check made payable to: "The Children’s Tumor Foundation". Please email me: dchene@nfteam.com or send me a message on Facebook and I will give my address.

Below is a photo of my cousin Shannon. She is thirteen years old now. If I were to attempt to describe her in one word, that word would be amazing. She is such a strong person who maintains a positive attitude and a perpetual smile no matter what comes her way. In 2002, Shannon won her battle with cancer. She is currently battling three brain stem tumors. She is a real fighter and I greatly admire her.

Shannon has endured more doctor's visits, tests, procedures, and needle sticks during the last eight years than most people will experience over their entire lifetime. Looking at Shannon you would never be able to tell that she has overcome so many difficult challenges. Despite everything she remains well adjusted, happy, and positive. She truly is my hero and inspiration...

We’ve all heard of Cancer, we’ve all heard of Diabetes, but most of us know nothing about NF. I was surprised to learn just how common it is. In fact, it affects almost 2 MILLION PEOPLE worldwide. However, because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 million Americans in this generation alone. I’ve included some NF facts and statistics below, please read them when you can.

---

Neurofibromatosis (NF) is more prevalent than cystic fibrosis, hereditary muscular dystrophy, and Huntington's disease combined. It strikes one in every 3,000 births, and affects people of all races and ethnic origins throughout the world. Half of all cases occur as the result of a "spontaneous genetic mutation" in families with no history of the disorder. This means that anyone's next child could be born with NF.

NF causes tumors to form on nerves anywhere in the body, including the brain and spinal cord. It can lead to loss of vision and hearing, disfigurement, loss of limbs, skeletal defects, and various forms of cancer, including juvenile leukemia. Learning disabilities occur at a rate five to six times higher among children with NF than those in the general population. Half of all children with NF require special education. Many of these children also have speech and motor deficits, or psychosocial and behavioral problems, which require therapy. Individuals with NF have a higher incidence of stroke, structural heart defects, hypertension and other cardiovascular complications, which can affect even very young children.