| April 18, 2017: Erin Benson of With Purpose joined us for our meeting on April 18. With Purpose is a youth and community-led movement dedicated to making sure kids with cancer have access to safe AND effective treatment options. Erin began by sharing what led her to start With Purpose. In 2013, her son Sam awoke in the night, screaming in pain. He was ultimately diagnosed with DIPG, a uniformly fatal brain cancer. They were told the best modern treatment could offer would give him, on average, another year. Because he was only 2, Sam was not eligible for clinical trials.
Erin continued describing how their life had changed: “So we began planning our escape. We would go everywhere, and do everything. We would manufacture joy at any cost; scrape the fun out of each moment because we knew they were limited. We would make Sam happy. In order to execute a plan like that you have to run. You have to pack up your newborns and your very sick child, put a smile on your face and turn off the part of your brain screaming ‘SAVE HIM!’….and just run. So we did. We took more than twenty trips around the United States. We ran from our home and jobs in South Carolina, relocating with family and friends in Minnesota. We ran to museums, zoos, toy stores, beaches and parks. But we weren’t fast enough. Near the end, we knelt down before that beautiful child and pleaded with him to tell us what we could do to make him happy. His response, “I am happy.” He died the next day. Sam survived two and a half years longer than expected which was mostly good times. The great question that lingered was why there wasn’t more done about childhood cancer. It is the leading cause of death among children; 1 in 5 will not survive 5 years and several forms of childhood cancer still have survival rates of less than 10%. The 3 major reasons for this lack of progress are: Lack of funding- these cancer’s are so rare as to offer no Return on Investment for drug makers-only 3 new drugs for childhood cancer have been approved in 30 years. The first stage is discovery research which has little funding from the National Cancer Institute. The next stage is proof of concept research that does not have any incentives to take discovery research and replicate it. The last stage is clinical trial research which is complicated, time consuming and expensive and pharmaceutical companies don’t fund it. With Purpose was started to get funding for this research and found that it was the kids who came up with fund raising ideas- one child raised over $10,000 on a youth fun run. Sam’s would be kindergarten class is working on a documentary about helping people inspired by Sam and With Purpose. With Purpose helps by supporting advocacy efforts for discovery research and has found a non profit, biotech start up to do proof of concept research. They also work with legislative advocates to focus on providing incentives for clinical research. Texas A&M has since started a chapter of With Purpose and the College of Charleston will soon start a chapter. — Don Baus, Keyway Committee
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April 18. With Purpose is a youth and community-led movement dedicated to making sure kids with cancer have access to safe AND effective treatment options. Erin began by sharing what led her to start With Purpose. In 2013, her son Sam awoke in the night, screaming in pain. He was ultimately diagnosed with DIPG, a uniformly fatal brain cancer. They were told the best modern treatment could offer would give him, on average, another year. Because he was only 2, Sam was not eligible for clinical trials.
Erin continued describing how their life had changed:
“So we began planning our escape. We would go everywhere, and do everything. We would manufacture joy at any cost; scrape the fun out of each moment because we knew they were limited. We would make Sam happy. In order to execute a plan like that you have to run. You have to pack up your newborns and your very sick child, put a smile on your face and turn off the part of your brain screaming ‘SAVE HIM!’….and just run. So we did. We took more than twenty trips around the United States. We ran from our home and jobs in South Carolina, relocating with family and friends in Minnesota. We ran to museums, zoos, toy stores, beaches and parks. But we weren’t fast enough.
Near the end, we knelt down before that beautiful child and pleaded with him to tell us what we could do to make him happy. His response, “I am happy.” He died the next day.”
Sam survived two and a half years longer than expected which was mostly good times. The great question that lingered was why there wasn’t more done about childhood cancer. It is the leading cause of death among children; 1 in 5 will not survive 5 years and several forms of childhood cancer still have survival rates of less than 10%.
The 3 major reasons for this lack of progress are:
Lack of funding- these cancer’s are so rare as to offer no Return on Investment for drug makers-only 3 new drugs for childhood cancer have been approved in 30 years.
The first stage is discovery research which has little funding from the National Cancer Institute.The next stage is proof of concept research that does not have any incentives to take discovery research and replicate it.The last stage is clinical trial research which is complicated, time consuming and expensive and pharmaceutical companies don’t fund it.
With Purpose was started to get funding for this research and found that it was the kids who came up with fund raising ideas- one child raised over $10,000 on a youth fun run. Sam’s would be kindergarten class is working on a documentary about helping people inspired by Sam and With Purpose.
With Purpose helps by supporting advocacy efforts for discovery research and has found a non profit, biotech start up to do proof of concept research. They also work with legislative advocates to focus on providing incentives for clinical research.
Texas A&M has since started a chapter of With Purpose and the College of Charleston will soon start a chapter.
Submitted by Don Baus, Keyway Committee