perkinstory

This is Why I Head to the Hill: 
Sandy and Richard Perkins

Our only child, Sam, was diagnosed in February 2011 with DIPG, a particularly aggressive and fatal pediatric brain tumor. In November of that same year, he passed away. He was 20 years old.

In the nine months between diagnosis and death, he fought with the courage of a lion to beat horrible odds. We fought with him to find the best treatment possible. But the reality was that there were NO effective treatments. Not then and not now.

When we heard about Head to the Hill in 2012 we decided to attend. The experience was so empowering we have returned for eight consecutive years. Each year we advocate with our members of Congress, share Sam’s story, and urge them to support the issues facing the brain tumor community. We want them to understand we are fighting not just for a budget increase or a policy issue, but the lives of our children, our wives, our husbands, our parents – even sometimes our own lives.

After Sam died, we knew we needed to continue the fight. We wanted to help bring about a time when someone diagnosed with DIPG would have effective treatment options instead of a death sentence. In the nine years since Sam was diagnosed, researchers have made great progress in understanding the genetics of this particular tumor, but there is still a long way to go to translate that knowledge into an effective treatment.


Your voice matters.

We need your voice with us at Head to the Hill 2020. Like the story above, your experience and connection to our shared cause can have a tremendous impact. If you’re ready to join a powerful community driven to create positive change for brain tumor patients, families, and survivors, sign-up to Head to the Hill with us in May 2020.