Valerie Guild: A Legacy of "Quiet Power"
Complications from cancer took Valerie Guild on May 21, at the age of 73. At the time of her death, Val was SWOG’s longest serving patient advocate.
Val helped build our advocate program from the ground up, and helped shape many of our melanoma trials. She built a non-profit, a tissue bank, and an international melanoma think tank. She developed relationships with countless melanoma patients and their caregivers, and shaped the careers of melanoma researchers around the world.
Dr. Ken Grossmann said he wouldn’t be the SWOG melanoma committee chair without Val’s advice, support, and introductions over the past 10 years.
“Val was an architect and a really great strategist,” Grossmann says. “She was always the person applying behind-the-scenes grease, smoothing disagreements, making progress with the protocol or the science, bringing people together on calls or at meetings.
“Val represented something you see in very few people. It’s quiet power. She didn’t say much. She was taking it all in, weighing ideas, considering options. Once she’d thought it through, behind the scenes, she’d get to work.”
Val first came to a SWOG meeting in October 2008, at the invitation of Dr. Vernon Sondak. At the time, SWOG had no formal patient advocate program and there were only a handful of advocates at group meetings. One year later, Rick Bangs arrived. With the encouragement of former group chair Dr. Larry Baker, the advocates came together. Val was there from the start, shaping a program that today is the largest and most sophisticated patient advocate program in the NCI’s National Clinical Trials Network. SWOG has 29 research and community advocates – all of whom are formally interviewed and selected, annually reviewed, and strictly term limited. They weigh in on all of our protocols, and serve on research support committees.
Bangs says Val’s analytical skills – she was a CPA with an MBA – were a major factor in defining the advocates’ role in the group. “Val brought a business rigor and mindset to the work,” he says. “She had a relentless focus on the objective and how to make it work – often by telling you what wouldn’t work. She was honest, insightful, and pragmatic.”
She was also intensely private. Some SWOG members may not know, for example, that Val got into melanoma advocacy and research because her daughter, Charlie, died in November 2003 from stage IV melanoma, at the age of 26. She only lived nine months after her diagnosis.
Val was frustrated. At the lack of late-stage treatments. At the lack of understandable information for patients and their loved ones. And at the lack of a patient voice in science, policy, and clinical care. So, in 2004, she created the Charlie Guild Melanoma Foundation, now the AIM at Melanoma Foundation. Samantha Guild, Val’s daughter, a melanoma survivor, and now the president of AIM, recalls that one of her mom’s ready phrases was “OK. Next. Done.” With AIM, that’s just what happened. The foundation immediately built a public-focused website and produced patient-centered materials, so families could understand the disease and the treatment options. In 2006, AIM launched the now-famous International Melanoma Working Group, a think tank that still continues, bringing together an international cadre of scientists, physicians, and industry leaders in foreign locales – Paris, Venice, Prague – to accelerate research. In addition, AIM helped seed sister organizations around the world: from Australia to Israel, and Latin America to Eastern Europe.
In 2019, Val’s most important dream was realized. AIM and the AIM at Melanoma Research Foundation launched the International Melanoma Tissue Bank Consortium.Two months before she died, the consortium opened a fourth branch at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago. The consortium will collect fresh frozen primary tumor tissue, with a goal of 500 samples in two years, plus blood and urine from each patient.
“This tumor tissue is like gold,” Sam Guild says. “Because it’s fresh frozen, the RNA is preserved. And locked inside that fresh frozen primary tumor are all the answers to melanoma. This bank was what my mom really wanted to create. It’s the original goal of the foundation. It took 15 years to open the first site, but she kept at it.”
Val’s legacy will live on – including in S2000, a SWOG new melanoma trial focused on brain metastases, a project she championed with vigor. It will likely activate this year. The melanoma committee has a new advocate, Sam Guild.
Dr. Toni Ribas, who worked with Val on the melanoma committee since he arrived at SWOG in 2011, was continually impressed by her knowledge, drive, vision, and ability to mentor women and junior faculty – including him – by organizing meetings and making introductions with pharmaceutical executives and big-name researchers. He said her constancy, and exactitude, were uncanny.
“During every monthly committee call and group meeting, as a line item in the agenda at the end of every meeting, Val would provide her well-informed comments from the patient perspective,” he says. “She would tell us if a trial was of high priority, or if a trial would not achieve the goal of helping patients. It could be because of the design, the justification of the experimental or control therapy, the potential side effects, or if it would have trouble accruing and not reach its endpoints. I have to say that she was right nearly every time!”
If you would like to leave a written remembrance to Val Guild, please visit the AIM memorial page here. If you would like to donate to AIM in Val’s memory, please visit this page.