Why September Matters

Every day, there's a radio or TV commercial with a well known hospital claiming to strike out cancer, save us with targeted treatments and let us hop on a bike hours after radiation or chemo. Naya went through surgery, chemo and radiation. She took a full year to regain her strength to get back on a bike.

If you have anyone close to you touched by cancer, you know the reality.

Cancer rates are going up. Cancer is predicted to become the leading cause of death overall, surpassing heart disease. It's already the leading cause of death among kids in the U.S. and growing. And, if you live in less fortunate country, the survival rates are a fraction of those in the United States.

• 1 in every 285 children in the U.S. will be diagnosed with cancer
• In the U.S., one out of every five children with cancer will not survive
• Nearly 2,000 children in the U.S. will die of cancer every year
• The vast majority of kids who do survive will suffer long-term side effects
• A child’s probability of surviving cancer is poor in less-developed countries

The runs, walks, pool parties, birthday donations, lemonade stands and childhood cancer events are critical as they are the primary source for funding new treatments and finding cures.

In less than 2 years, our donors have helped us raise over $350,000. We have also made sure 100% of the donations to Team Naya and The Naya Foundation are used for childhood cancer research and cures. So far, we've been able to commit to a clinical trial, gene sequencing and fund research to support advancements in childhood cancer cures. Thank you.

Dr. Benjamin Mizukawa, a St. Baldrick’s Scholar at Cincinnati Children’s Hospital Medical Center, puts it this way:

“When you save a child’s life, you affect families, future generations, and everyone that child will influence over a lifetime. When you support a scientist, you affect not only the current work, but all the trainees, collaborators, and personnel connected to the work, and all their future studies that will follow over a lifetime."

**Statistics from American Cancer Society, 2014

Eight Months Later, Big Data and The Parkway Run→

Naya & Hank - 2013 Parkway Run

It's been a long 8 months. Full of heartache, sadness, emptiness..and hope. Our friends are amazing with their love and support. We've met incredible people dedicated to curing childhood cancer and children's health. We've learned about the obstacles that are in the way, but can be overcome. We're figuring out how to really make a difference. 

We also know we have to move faster. Cancer is the #1 killer of kids under 20, and more kids today are suffering from cancer - including one of Naya's closest friends. I cry for each child I know, and it's one too many.

Our first lesson - data needs to be shared, in real time. Real time genetic, clinical and research data shared between scientists surfaces new ideas, enables innovations and accelerates finding cures. More ideas will lead to curing childhood cancers.

Our second lesson - private funding is critical. The NIH has limited funding and the grant system creates competition for that limited funding. This can keeps institutions from sharing data real time. Not all children's hospitals share data. Isn't that crazy? Knowing that infuriates me!  

Donors and a few leading institutions, including The Children's Hospital of Philadelphia and the University of California at San Francisco, have created consortiums that share information between scientists and encourage collaboration between specialists (immunology, oncology, neurosurgery and radiology). With their leadership, more hospitals are jumping on, and sharing data. Yes, this is "Big Data" for those of you interested in technology.And, this enables Personalized Treatments, aka Precision Medicine.

Private funding is required to fund these new trials and consortiums. That's where we you come in. It's time for the Parkway Run. We want to raise more than $100,000 again this year. 

Sign up to run or walk with us, and please donate by clicking here.

Eight months ago, Naya passed away. Her absence is felt deeply in our hearts every day. I miss her laughter, and love of simple things - from making crafts, to swimming, playing with the dogs and making dinner with Hank. Naya's absence is the driving force behind our efforts to find cures for childhood cancer. That was her only wish, and we're committed to making it real. We love you Naya. 

What's Next

Here is Naya skiing on a black diamond 4 weeks ago!  We can't wait to get back out there again.

Today, Naya is in neuro-psychological baseline evaluations all day.  They establish a baseline pre-treatment so we can understand the effects of the treatment and help her if needed.  She was accepted into an ongoing study for her specific pathology.  The study focuses on two variables and randomly assigns the participant into one of four arms of the treatment regiment.  That treatment starts tomorrow.  It consists of 6 weeks of radiation therapy - proton and photon, followed by eight, six week, cycles of chemo maintenance.

One day at a time and soon enough we will be heading down those slopes again.