ALK Positive Announces Formation of Scientific Advisory Board

ALK Positive has established a 12-member scientific advisory board that will guide the patient-driven organization’s research and strategic priorities, its leadership announced today.

“Now with the scientific advisory board, we have an even more powerful group of minds that can help guide us,” Kirk Smith, patient with ALK-positive lung cancer, patient advocate, and president of the ALK Positive Board of Directors, told Lung Cancers Today in an interview.

The formation of this board will help the organization meet its mission of finding a cure for ALK-positive lung cancer in multiple ways, officials said. For example, the scientific advisory board will provide support to ALK Positive and its medical and research committees on a range of activities, including emerging research, clinical trial guidance and scientific trends, evaluation of collaborative projects, networking, and educational content.

“Our number one goal is to drive research to a cure for ALK-positive cancer,” Smith said. “Part of that is cultivating and leveraging an expert scientific advisory board to help prioritize opportunities and investments for research and clinical trials.”

Ken Culver, MD, ALK Positive’s director of research and clinical affairs, explained that the scientific advisory board will help advocate for the inclusion of patients with ALK-positive disease in clinical trials by providing the data and scientific rationale to investigate therapies that may benefit this population of patients.

“Now we’re creating new opportunities for ALK patients that would otherwise never happen,” Dr. Culver told Lung Cancers Today in an interview, explaining that for example, many immunotherapy trials have excluded patients with ALK-positive disease.

“We are working hard to get these scientifically driven, patient-sensitive trials that allow us to do things and answer these key questions quickly so that we could know now, not five to six years from now,” Dr. Culver said.

Smith, who was diagnosed with ALK-positive lung cancer in 2013 and became involved with ALK Positive in 2019, shared what the formation of the ALK Positive Scientific Advisory Board means to patients, families, and caregivers.

“This announcement to our community is a big deal…. We are out there trying to make things happen and trying to drive it, and I think that is very important to hear when you’re diagnosed with a terminal disease,” Smith said.

When Smith was diagnosed with ALK-positive lung cancer, the advocacy landscape was quite different than it is today, he explained.

“I was diagnosed in 2013. This organization didn’t exist in 2013. It started initially as a Facebook support group page in 2017 by a woman who was an ALK patient and didn’t know anybody else that had the disease. I didn’t know anybody in 2013 that did either,” Smith said. “There wasn’t an organization like this because for one, when you got [diagnosed with] stage IV lung cancer, you didn’t live long enough to start organizations.”

He explained that nonprofits such as ALK Positive arise because “somebody has a passion, they see a need, they get involved in something to help, they want to make a difference.” However, as ALK Positive grew, organizers recognized that having a formal board of scientific experts would help move the organization and its mission forward.

“We knew that was something to aspire to,” Smith said, explaining that Dr. Culver provided the organization with perspectives, insights, and connections that helped with the formation of the scientific advisory board.

Dr. Culver reflected on the power of bringing together a large group of distinguished physician-scientists who have a wide variety of backgrounds in clinical oncology and research.

“When you get that diversity of opinions, experiences, and views together in one room, you get things you otherwise wouldn’t get… it really is invaluable,” Dr. Culver said.

The phrase “Stronger Together,” which was the theme of the 2024 ALK Patient Summit, also captures the importance of creating the scientific advisory board, Dr. Culver said.

“I see the scientific advisory board being exactly analogous to that [theme],” he said. “We have these men and women who are fantastic ALK scientists working in different institutions that allow some degree of collaboration, some degree of competition, and they’re all working towards the goal to benefit our patient group. By creating the scientific advisory board, I feel like we’re completing the picture of our key constituents who are going to drive ALK lung cancer to a cure… stronger together, is to me, key.”

About the ALK Positive Scientific Advisory Board Members

The ALK Positive Scientific Advisory Board is composed of “renowned experts in ALK-positive cancer to guide the organization’s research initiatives and strategic direction,” officials said in the announcement, explaining that the formation of the board “underscores ALK Positive’s commitment to funding the highest quality research and educational programs for its patient community.”

“They’re experienced thoracic oncologists,” Dr. Culver said. “The fact that they’re willing to donate their time to be a part of our [scientific advisory board] and move this forward means a lot, says a lot about them as people.”

Multiple members of the newly created scientific advisory board shared what it means to them to become the board’s inaugural members.

“I’m so honored to be a part of this community of researchers as we strive to increase the cure rates for our patients with ALK -positive cancers,” ALK Positive Scientific Advisory Board member Mark Awad, MD, PhD, said in a statement.

ALK Positive Scientific Advisory Board member Ross Camidge, MD, PhD, reflected on the importance of bringing physician-scientists together to form the patient-driven organization’s scientific advisory board.

“Progress partly comes from science and from clinical trials, but also from changing how we think,” Dr. Camidge said in a statement. “It is only together, as a team, including all those whose lives touch and are touched by this disease, that we can do that.”

ALK Positive Scientific Advisory Board member David Carbone, MD, PhD, highlighted why it’s crucial for clinicians, patients, and caregivers to work together.

“ALK Positive has really pulled the ALK community together and formed it into a powerful force for progress,” Dr. Carbone said in a statement. “It is crucial to pair the enthusiasm and energy of patients and caregivers with top experts to optimize progress, and I am very happy to be part of an exceptional team they have assembled for the scientific advisory board.”

ALK Positive Scientific Advisory Board member Christine M. Lovly, MD, PhD, explained how the scientific advisory board will impact the field and the treatment landscape for this community of patients.

“Patient-driven initiatives are essential in shaping meaningful scientific progress, and I am excited to contribute my expertise to support innovative research that directly impacts those affected by ALK-positive lung cancer,” Dr. Lovly said in a statement. “Together, we can bridge the gap between scientific discovery and patient needs, driving forward new treatments and improved outcomes.”

ALK Positive Scientific Advisory Board member Alice Shaw, MD, PhD, shared how the scientific advisory board will support the organization and help move the field forward.

“I am thrilled and honored to join the ALK Positive Scientific Advisory Board and to help guide the scientific direction of this important patient organization,” Dr. Shaw said in a statement. “While tremendous progress has been made the last decade, more research is urgently needed to further improve on patient outcomes. Guided by the ALK Positives, this board will be charged with thinking boldly and creatively – ‘outside the box’ – in order to advance new and potentially curative approaches to ALK-positive lung cancer.”

ALK Positive Scientific Advisory Board member Alexander Spira, MD, PhD, FACP, FASCO, reflected on the importance of joining the board and helping to address unmet needs in the ALK-positive community.

“I am honored to be part of such an illustrious team and group and support the advancement of science for our ALK-positive patients,” Dr. Spira said in a statement. “While we have made huge strides over the last few years, there is a lot more work to be done to improve the lives of our ALK-positive patients and I’m humbled to be part of this group.”

The ALK Positive Scientific Advisory Board members are:

• Dr. Mark Awad, chief of the Thoracic Oncology Service within the Solid Tumor Oncology Division, Department of Medicine at Memorial Sloan Kettering Cancer Center
• Dr. Ross Camidge, professor of medicine/oncology, Joyce Zeff Chair in Lung Cancer;
  director, Thoracic Oncology; faculty, Developmental Therapeutics Program, University of Colorado Cancer Center
• Dr. David Carbone, professor of internal medicine, Barbara J. Bonner Chair in Lung Research; director of the James Thoracic Oncology Center at the Ohio State University Comprehensive Cancer Center
• Dr. Shirish Gadgeel, chief, Division of Hematology and Oncology, Department of Internal Medicine, Henry Ford Cancer Institute/Henry Ford Health System
• Dr. John Heymach, chair of Thoracic/Head and Neck Medical Oncology at the University of Texas MD Anderson Cancer Center; David Bruton Endowed Chair in Cancer Research
• Dr. Vincent Lam, associate professor of oncology; director, Thoracic Oncology Clinical Research Program, Johns Hopkins Cancer Center
• Dr. Jessica Lin, associate professor of medicine, Harvard Medical School;
  attending physician, Center for Thoracic Cancers, Massachusetts General Hospital; attending physician, Henri and Belinda Termeer Center for Targeted Therapies, Massachusetts General Hospital
• Dr. Christine Lovly, associate professor of medicine, Division of Hematology-Oncology, Vanderbilt University Medical Center and Vanderbilt Ingram Cancer Center
• Dr. Ignatius Ou, clinical professor, Division of Hematology/Oncology, University of California-Irvine School of Medicine; Hamoui Salous Endowed Chair in Thoracic Oncology Research
• Dr. Angel Qin, clinical associate professor, Rogel Cancer Center, University of Michigan
• Dr. Alice Shaw, chief of Strategic Partnerships at Dana-Farber Cancer Institute
• Dr. Alex Spira, co-director, VCS Research Institute; director, Thoracic and Phase I Program; clinical assistant professor, Johns Hopkins; director, Virginia Cancer Specialists (VCS) Research Institute and the Phase I Trial Program

To learn more about ALK Positive, its research, events, resources, and more, visit its website at https://www.alkpositive.org/.