The Scientist and Noreen’s Dream: The Meeting that Changed the Culture of How Scientific Progress Is Made Today
Meenhard Herlyn’s and Noreen O’Neill’s vision for funding melanoma research built bridges between scientists, doctors and patients.
It was the late 1990s. Meenhard Herlyn, D.V.M, D.Sc., was a professor in Wistar’s Molecular and Cellular Oncogenesis Program. He was a prominent basic science investigator leading a major melanoma lab at The Wistar Institute that had been studying melanoma biology since the 1970s. Through DuPont Guerry, M.D., an oncologist and hematologist and Penn colleague, he met Noreen O’Neill. She was a Philadelphia business executive and trendsetter diagnosed with advanced malignant melanoma. Both were eager to raise money for melanoma research.
"Noreen came into our life at the right time."
Herlyn reminisces back to when he was a young research scientist receiving nameless and generic melanoma tissue in a culture dish; it was like routine oil changes to keep the “engine of science” running. Scientists can easily get caught up in the day-to-day lab bench work and the need to publish and lose sight of the patient. Mentored by the eminent Wallace Clark, Jr., M.D., Penn professor of pathology and dermatology, Herlyn understood that a scientist does not just study diseased tissue but also tries to comprehend how that tissue became cancer. However, he had yet to meet a patient. It was some 20 plus years later—well into the late 1990s—that Herlyn met Noreen O’Neill. Little did either of them know at the time that this meeting would lead to a partnership that would be a game changer for Wistar and melanoma research.
"When I was approached by Noreen it was very special for me," said Herlyn. "Never in my life had I ever met a patient, and here was this vibrant, beautiful young lady facing the prospect that she may die in the next few years from melanoma. Suddenly, there was a person behind what we are working towards in our research."
Noreen asked her sister Kate to join her at Wistar because she was apprehensive about meeting the scientist in what seemed like a world removed from the general population.
"To Meenhard, Noreen was remarkable as a person and remarkable as a melanoma patient, and she appreciated the irony that you could conduct research and never meet the people you were helping," said Kate.
Now the abstract notion of cancer had a face and a name, and Herlyn was motivated to work with Noreen to raise funds for melanoma research.
"Meenhard was willing to do anything to support this important research," said Kate. "If Noreen was a person to take a chance on figuring out how to raise money, Meenhard was right there with her. You couldn't be involved with Noreen and not have a personal relationship with her, and Meenhard is like that too. He’s not hiding behind an exterior—what you see is what you get."
Together they started a new era of proactive outreach to the National Institutes of Health (NIH) and teamed up to change the perceptions of political and governmental decision makers. The scientist-patient duo quickly learned how to make legislators and other leaders listen. This shared drive to engage politically and publicly affected change in people throughout the Philadelphia region and at the national government level. Breast cancer advocates had become strong enough to convince congress to take funds from the Department of Defense to invest in breast cancer research. Herlyn knew now was the time to act.
"Noreen was a vocal, well-spoken individual who easily commanded and convinced a crowd," said Herlyn. "She had it all: energy, activism, motivation, drive, and ability to move political mountains and open doors that had been closed to us at research institutions, in Washington and at the NIH. She was a Philadelphia executive very much in the public eye and everybody knew her. All these things combined to make her an incredibly strong advocate for the research and researchers. No longer would we be perennially fundraising and applying for grants from the NIH or reaching out to industry for funding. Our new strategy was advocacy."
Noreen and Herlyn possessed many similar qualities: tenacity, a great ability to network and a vision of what they wanted. Their mutual admiration during a critical time in Noreen's and Kate's life resulted in a very close and enduring friendship. But Noreen faced a setback after receiving a new treatment and ultimately passed away in 2000. The Noreen O'Neill Foundation for Melanoma Research was realized in 1999 and raised more than $70,000 at one event christened Noreen's Dream in 2001. This first event raised lots of money, engaged people around melanoma research, and spurred the research community, Kate, and her family and friends to think big. Herlyn and Kate decided the best use of the money was to hold an international event bringing together melanoma researchers from around the U.S. and the world.
"When we held the 1st International Melanoma Research Congress," said Herlyn, "we realized there was a big separation in cultures between basic researchers and clinicians and they had no forum where they could come together. The American Association for Cancer Research's annual meeting was an immense meeting and clinicians wouldn’t go there and experimentalists wouldn't go to the clinical-focused American Society of Clinical Oncology meetings. Clinicians met amongst themselves but researchers never got together. I'd been in the field for some time and knew many people, so we invited 35 speakers from around the world to Philadelphia. It had never happened before. And at the conference, people were delighted about the strength of the research and that they could talk to each other and start collaborating."
The 1st International Research Congress in 2003 became the Society for Melanoma Research and is still going strong today. Meenhard is the founder and the meeting he organized with Kate started a yearly gathering of melanoma experts from around the world.
"The conference was well-attended and energized the melanoma research and treatment community," said Kate. "All these young researchers were looking for their life's work and a promising research direction to follow. And this conference had a great lineup of scientists and embodied a promise that there was interesting work, and work that would support you in melanoma research. At the end of the conference as people attended last sessions and prepared to leave, one researcher from Netherlands said to me, 'I was thinking of getting out of melanoma research because it didn’t seem to have a future, but this has really inspired me and I’m staying in.' I remember telling Meenhard about it. This one young person came up to me, but more researchers must have talked about it and this was galvanizing."
In 2013, Herlyn, together with Ashani Weeraratna, Ph.D., and Lynn Schuchter, M.D., organized the 10th international meeting. Meanwhile, Herlyn became involved with other foundations beyond the Philadelphia region and especially active in national and international advocate organizations like the Melanoma Research Foundation.
"I wanted to translate what we were doing into a clinically meaningful endeavor. I then realized through the political push in Washington D.C. where former Senator Arlen Specter was a big advocate for doubling cancer research funding, that it would all come together," said Herlyn. "And there was a conceptual shift in our minds to bridge the lab and the clinic. We said 'from bench to bedside' or vice versa. So, I became a translational researcher. Today, we go one step further—'from bench to bedside back to bench.' This concept has really grown in the US and around the world."
Noreen's family, including sister Kate, mother Eleanor, and stepfather Larry Murdoch, took on the Foundation with many of Noreen's friends on its board. Kate ran the Foundation’s daily operations and made huge advances bringing together people who became advocates for melanoma awareness. Kate also spurred the energy of Noreen's friends to hold events like Running for Cover, a run and walk at the Wells Fargo Center that spanned 15 years, and a campaign on behalf of the Foundation in Harrisburg, Pennsylvania. Now the Noreen O'Neill Foundation for Melanoma Research has transitioned to a Wistar Institute Fund, and Wistar held its first Noreen O'Neill Melanoma Research Symposium in 2017.
"I have so much hope for the future of melanoma research," said Kate. "Dr. Ashani Weeraratna and the talented next generation of scientists like her at Wistar and beyond have learned from Meenhard and launched from there. They've benefited from this wider view, this cooperative world. These young scientists have taken ownership of many lines of research and they do it with, what I think is, a 'Meenhard' personality trait: generosity and a sense of caring. Caring about each other and caring about people impacted by melanoma."
Basic biomedical researchers still need to do the fundamental work that is the foundation of scientific knowledge, but at same time the new generations of researchers are building bridges.
"In those early days, Wistar seemed a world removed from the general population, but in fact it wasn't," said Kate. "Scientists don't think of themselves as isolated, and there’s definitely no ivory tower, in fact, Wistar scientists are right in the midst of it all."
"Today clinicians are learning the language of experimentalists and experimentalists listen to the clinics needs and must understand where are the gaps and what are the important questions," said Herlyn. "The time it takes to move lab discoveries to the patient has gotten much shorter. Modern technology has allowed this. So, we feel that what we’re doing is relatively quick and is soon benefitting patients. This all came through Noreen who said 'let’s go out in the community and use my connections and see how we can raise money.'"
"Before learning how scientific research happens, Noreen assumed doctors were doing all the work because they are the ones meeting patients," said Kate. "But she discovered this whole other world beyond physicians that captured her imagination."
Meeting Herlyn opened up a world of scientists to Noreen. She learned scientists put just as much in their scientific lifework as doctors treating patients.
Bringing scientists and patients together in a more meaningful way was a vision Noreen and Herlyn shared almost twenty years ago. It continues to influence Wistar scientists in pursuit of fundamental answers to basic biological questions. Those answers are the foundation for applied sciences and eventually basic discoveries translate into breakthrough cures and the betterment of society.