Patient-driven Research

Posted by ALCF Staff on September 18th, 2018

Jesse Karlin, Dave Karlin ALK+ Survivor, Barb Karlin, Emily King (Cody’s fiancée), Cody Karlin

Early detection survivors and patient-driven groups such as the EGFR Resisters, ALK Positive and ROS1ders have joined forces with the Bonnie J. Addario Lung Cancer Foundation (ALCF) to promote research and new treatment options. Much is still unknown about lung cancer, its subsets, ability to outwit drugs, and why so many young, healthy people are getting the disease. Patient advocacy groups – with Bonnie J. Addario at the helm – are closing those gaps.

“13 years ago when Bonnie launched the foundation one major goal was to ensure patients “had a seat at the table” and a voice in the lung cancer community, said David LeDuc, Executive Director of ALCF. “It is exciting to be at a point where not only are patients being recognized as the most valuable members of the lung cancer community, but that ALCF can play a part in bringing them together, amplifying that voice, and working to develop, launch and fund studies for these patients. We look forward to continued partnership and in expanding these opportunities.”

Lisa Goldman ROS1 Survivor, Husband Eric Goldman, Daughter Dina Goldman, and Son Jacob Goldman

When Mountain View attorney, spin instructor, wife and mother Lisa Goldman was diagnosed with ROS1-positive lung cancer, she found there was very little research being done on effective treatments. She co-founded the ROS1ders (pronounced Ross Wonders named for their particular genome type) which now includes patients from more than 20 countries who are driving research, clinical trials and new, effective treatments. She was invited to speak at the World Lung Cancer Conference in Japan and her speech was titled, “The ROS1der Story:  How a Group of Patients, Advocates and Doctors Launched an International Research Effort.”

Dave Karlin of Belmont was diagnosed with Stage 4 EGFR positive lung cancer in March 2017. His doctor told him that he was in the lucky ten percent and that his cancer could be treated with a pill instead of chemotherapy and radiation. Recent scans show no new tumor growth. Karlin is a member of the EGFR Resisters, a grassroots patient-driven community, dedicated to changing EGFR positive lung cancer into a manageable, chronic disease by driving research and funding clinical trials.

ALCF is also partnering with ALK Positive, an online community of over 1,200 members worldwide, to encourage Lung Cancer Registry membership.

“The Lung Cancer Registry is a game changer,” said Tom Carroll, who co-founded ALK Positive with his wife, Merita, before she died from lung cancer in April 2018. “The registry links patients and their data to doctors and researchers searching for better treatments. We strongly believe patient data provides the key to solving the puzzle of ALK-positive lung cancer. The more patients who take part in the registry, the faster we can move towards a cure.”

ALCF, along with partners, the American Lung Association’s LUNG FORCE and the International Association for the Study of Lung Cancer (IASLC), developed the Lung Cancer Registry to provide researchers and clinicians with a data repository of information on all types of lung cancer, including ALK-positive lung cancer patients, as well as other genetic subpopulations, that they can use to further research.

“The cure for cancer lies within the patient,” said Bonnie J. Addario, 14-year lung cancer survivor and founder of ALCF. “The work that the ALK Positive lung cancer group is doing to advance research for this oncogene, and all lung cancer patients, is critical to creating a paradigm shift. Nearly a quarter million Americans will be diagnosed with lung cancer this year, and this patient-driven resource where patients share their information about living with lung cancer allows scientists and researchers the opportunity to learn from patients first hand.”

Lisa and Dave have created fundraising teams for the 10th Annual Your Next Step is the Cure Superhero Walk/Run on September 29 to support ‘Superhero Survivors and Superpower Studies’ of ALCF.

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