|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
April 11, 2017 – As spring is bringing its usual influx of tourists, Tom Doyle’s presentation this week was particularly on topic. Doyle began work as a driver for Palmetto Carriage Company in 1977 and become president in 1983. He remained at the helm of the company until very recently when his son took over the reins (pun intended!). Doyle originally moved to Charleston to attend the Citadel in 1966 where he obtained his bachelor’s degree and has never left. He is a past president of the Low Country Association of Tourism Executives. With Palmetto he has been honored to arrange tours for U.S. Presidents and other dignitaries, including Neil Armstrong to whom he gave the warning as he boarded the carriage to “watch that one small step.” Doyle noted that most visitors to Charleston do some shopping and walking, but when it comes to structured events most take a tour and the vast majority of those taking tours make that tour a carriage ride. Continue reading “Tom Doyle: Palmetto Carriage Company”
April 4, 2017: Our speaker was John Scott Cowan who spends winters at our club and the remainder of the year at his home in Canada. John has been a professor of physiology, chair on the medical faculty, then Vice President of the University of Ottawa and later Vice Principal of Queen’s University. He spent 9 years as Principal of the Royal Military College of Canada and chaired the Defense Advisory Board of Canada. Continue reading “John Cowan: Is War on Terror Possible?”
March 28, 2017 – This week’s timely message about our community came from Otha Meadows, President and CEO of the Charleston Trident Urban League (CTUL). Meadows has a long history of serving his communities through the Urban League. He previously headed the Urban League of Indianapolis and the Urban League of Columbus, Ohio, where he steered a major building campaign to a successful conclusion. He was eager to provide us with insight into the dramatic impact the CTUL has in our region. Continue reading “Otha Meadows: Trident Urban League”
March 21, 2017 -Brigadier General Darren Hartford, Commandant at National War College in Ft. McNair, Washington DC joined us for our March 21 meeting. Gen. Hartford previously served as the 437th Air Wing Commander at Joint Base Charleston. Gen. Hartford has over 4,000 flight hours of experience in the Air Force. Continue reading “Brigadier General Darren Hartford: National War College”