When our 2-year-old son, Sam, was diagnosed with DIPG – a uniformly fatal brain cancer – we were shocked and devastated to learn that no life-saving treatment options existed. Hearing your child is in danger lights a fire in any parent. The energy in your body and mind unify and all action is driven towards one goal: protecting your child. Although we lost Sam in March of 2016, we still feel the f
ire every day. Like many parents, we are trying to harness it. That’s why we started With Purpose. With Purpose is a nonprofit organization dedicated to making sure kids with cancer have access to safe, effective treatment options by empowering youth and community leaders to take action. In short, With Purpose invests in the energy and power of young people to change the world, and believes it will be the next generation of leaders that will change the story for childhood cancer treatment in the US. Childhood cancer is currently the leading cause of death from disease among children in the U.S. For many pediatric cancers, there has been little to no advancement for treatment since the 1970's which is one of the reasons why 1 in 5 kids diagnosed with cancer in the US today will not survive. Even current life-saving treatments often result in long-term, costly medical issues for children who do survive. With Purpose attacks three distinct pain points in the complex problem of advancing treatment for kids with cancer and, in turn, giving families hope for a better future.
- Lack of funding for research - Currently, the National Cancer Institute designates roughly 4% of its research budget to all forms of childhood cancer. With Purpose supports advocacy and awareness efforts that attempt to persuade the NCI to designate a higher percentage of research dollars to childhood cancers.
- Lack of "proof of concept" research - Too often, promising discovery research for childhood cancer is published but does not result in clinical trials or new treatments for kids actually fighting the disease. With Purpose supports the Children's Cancer Therapy Development Institute, a nonprofit biotech that translates discovery research into real clinical trials and, one day soon, life-saving treatments.
- Lack of profitability for pharmaceutical companies – While pharmaceutical companies play a major role in developing treatments for adult cancers, they rarely invest in pediatric cancer research because it is not a profitable endeavor. With Purpose supports Kids V Cancer, a groundbreaking organization that pioneered the Creating Hope Act, a priority voucher program that has resulted in almost $1 billion in incentives for companies that develop drugs for kids with cancer and other life-threatening diseases. They are now working to pass the RACE for Children Act, which would require companies developing cancer drugs to undertake studies of their drug in children when the molecular target of their drug is relevant to a children’s cancer. Your support will allow With Purpose to grow our impact, educate and inspire young populations around the country and raise awareness of the lack of progress for childhood cancer. In short, your support would empower students to directly embody the premise With Purpose was built on: that today’s kids have the energy, education and resources to do anything…even cure cancer.
