my story

My name is Casey, and I am 17 years old…your typical teenager…if there is such a thing as typical. When I was 14 years old, my brother Tanner passed away, at the age of 11, from a Glioblastoma brain tumor. He had a hereditary cancer gene called the mutant p53, which can lead to many types of cancer. Before Tanner, our family only had one hereditary cancer. My Grandmother had breast cancer at an early age.

When I was 14,  I also learned I had the same mutant gene, and I have over a 90% chance of getting different types of cancer. I don’t let this get in the way of living my life. The way I see it…Knowledge is Power. Is it scary to know this? Yes, but it would be scarier not knowing and not doing something about it.

When I was 15, I volunteered for a N-of-1 Study (that means a study of one) at the J. Craig Venter Institute (JCVI) in La Jolla, California. At JCVI, Dr. Nicholas Schork directs the N-of-1 project and also collaborates with researchers at other institutions to not only help me, but also help others.

J. Craig Venter Institute, La Jolla, CA

Here I am with Dr. Craig Venter, one of the great scientists in the world, who led the team to sequence the first human genome. How cool is it that I’m holding a 3D replica of his brain!

To keep me healthy, I am regularly monitored, using the latest science and technologies, by some of the smartest doctors and scientists around the country. The idea is to detect cancer before it becomes cancer…Stage Zero.

After my brother died, I didn’t want what happened to him, to happen to me, or anyone else. I thought my parents’ generation would be the ones to lead the way in being proactive, but what I learned was just the opposite. Most people in their generation are too afraid to have genetic testing, because they’re scared of what they will find out…about themselves and their children. They just don’t want to know.

My generation does want to know. It’s up to us to be proactive. It’s up to us to learn about our family history and do something about it. It’s up to us to live the longest and healthiest life as possible. It’s up to us to make a difference. Genome Generation is the first step of our journey.

I want my website to encourage conversation with my peers, from all over the world, to understand their family history of hereditary diseases…Knowledge is Power. Start with filling out your family tree and be as proactive as you can be.

We are the Genome Generation, G2 and IT’S TIME TO KNOW.

Please check out this video of Dr. Schork and me in the JCVI lab.