Inaction Is a Disease

In less than 2 weeks, I've learned about five people I know either very or pretty well, that are dealing with a battle with cancer, and a battle to live. Their ages...12, 27, 40, early-40's and 43. And, if you knew them, you'd understand that each one is a person that has the ability to change the world.

I know you're thinking "Well, that's Amy. She is in the 'world' of cancer.  That's not me. Cancer is rare, especially in kids." If you are thinking any of this, realize that cancer is not rare, and it kills more children than any other disease. No disease comes close! Cancer. It's about to take over heart disease as the #1 killer. 

I ask myself everyday - why isn't this changing? What's the fundamental, underlying reason why we aren't urgent about childhood cancer? How many videos do we have to see of kids battling this horrible disease to stand up for kids?

The change in the last 20 years is incremental. "Incremental" is my latest word to define disgust. 'Incremental' represents death. Extreme? Maybe. But, maybe not. If it's you, or your kid, than not.

I've come to realize that there is a fundamental disconnect with knowledge and action. This inaction is, in itself, a disease. A disease that kills.

My time is spent figuring out why. Why is this not getting the focus it needs when the data is so clear, and the stories are so upsetting? Kids are losing their future. What's going on?

Let's figure it out together. Join Us. @nomorekidswithcancer or nomorekidswithcancer.org

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. 

Changing Lives Is Withing Reach

The ability to change the world is in front of us. The past few weeks have shown us that passion, activism and standing up for what is right can change entrenched ideas, and improve and save lives. We're witnessing the removal of the confederate flag, legalized marriage for all and musicians getting paid for great music thanks to Taylor Swift. 

I follow change agents including Bill Gates, Tim Cook, Al Gore, Arianna Huffington and many others who are changing education, health, wellness and ultimately the quality of our world and lives. But, it doesn't take a CEO or VP to change the world, as Alex Scott of Alex's Lemonade Stand has shown us.

MY heroes are the researchers, scientists, technologists and healthcare professionals who are dedicated to curing pediatric cancer, and fulfill my late daughter Naya's wish.

So, if hundreds of years of traditions can be changed, and devastating diseases can be cured, curing pediatric cancer is going to be one of those areas we will cure if we loudly speak up.

This summer, I will launch a campaign to build awareness of the need to cure pediatric cancer, with the goal of raising funds to help find more treatments and cures.

Please help by following us @nayafoundation or on Facebook. More to come!