BIOMARKER COLLABORATIVE - Key Persons
Job Titles:
- Member of the Officers Team
- Treasurer
Clark is a stage IV lung cancer fighter, diagnosed in November 2015. He is married to an amazing nurse with 2 grown children. Clark is a CPA (soon to be retired) who has decided that his next chapter will be advocating for more funding for research.
Debbie was diagnosed with Stage 4 lung cancer in March of 2013 at the age of 43 years old. She was diagnosed with NSCLC, Adenocarcinoma, with the BRAF V600e mutation. She is a 3rd generation lung cancer patient. Her mother and grandmother both died of lung cancer. At the time of diagnosis, there were no treatments in lung cancer for BRAF. Her options at the time where chemo. Her first treatment was 6 rounds of Carboplatin, Alimta and Avastin, then another 6 of Alimta and Avastin. Debbie took a "chemo break" for the next 12 months. In 2015, she had mild progression and was then able to go on trial for a BRAF combo of Dabrafinib and Trametinib. She stayed on the trial for 2.5 years until side effects removed her from the trial. She then went back on Alimta maintenance for another 12 rounds and again went on another "chemo break". In April of 2020, she again had progression and did 10 rounds of radiation and started back on Alimta maintenance and currently on this treatment plan.
Debbie is a wife, mother, grandmother and an advocate. She enjoy spending time with family and friends, crafting, taking photographs and getting in small vacations. Between and during treatments her other activities include:
Job Titles:
- Co - President
- Member of the Officers Team
- Director on the Board of ALK Positive, Inc
Gina is a Director on the Board of ALK Positive, Inc., a non-profit 501c3. Gina Hollenbeck has lived with Stage IV Lung Cancer since 2015. She is a wife and mother of two boys. In 2018, Gina became the President of ALK Positive, a patient-driven group with the mission to improve the life expectancy and quality of life of ALK positive patients worldwide. She is currently serving as the Advocacy co-chair and on the Board of Directors. She is a driven advocate for lung cancer research, early detection, patient-centric clinical trials, and biomarker testing.
Diagnosed in 2015, Gina has endured brain surgery, radiation, removal of 2/3 of her left lung, and daily targeted chemo-therapy. As a nurse and a person with no risk factors, Gina was shocked that anyone with lungs can get lung cancer. She was an athlete and practiced a healthy lifestyle. Through much persistence, she finally received a diagnosis at age 38. Her only symptom was a cough. At diagnosis, her cancer had already progressed to stage IV with metastasis to her brain.
Gina is an advocate for early detection of lung cancer, biomarker testing, and for easier access to clinical trials. She has spoken at many media and pharmaceutical events. She has served as a panelist for GO2Foundation for lung cancer, ASCO, NTREK Summit, ALK Positive Summit, and NLCRT 2018, 2019, 2020. She serves on the NLCRT Women and Lung Cancer task force as well as the Biomarker Planning Committee. She co-lead a team to form the Biomarker Collaborative that advocates for biomarker testing and advocacy across tumor types. In 2019, she was granted the prestigious honor of being selected as one of the Patient Advocate Travel award recipients to the IASLC 2019 World Conference on Lung Cancer held in Barcelona, Spain. Gina has collaborated and served as an advisor to Pfizer, Takeda, and Genetech. She has had the honor of serving as a consumer reviewer for the Department of Defense Lung Cancer Research Program. Gina has been featured in Time, Health, and on local Memphis media. In addition to speaking, Gina and her husband, Greg, believe that fundraising events in their community serve to educate those around them about lung cancer, the inadequate funding for lung cancer research, that lung cancer is the number one cancer killer of men and women and that anyone with lungs can get lung cancer. They have created 2 annual events that they host to raise awareness and money for lung cancer research. Gina is an advocate who is driven by passion to change the outcomes for all who are diagnosed with cancer.
Job Titles:
- Co - President
- Member of the Officers Team
John is the President of MET Crusaders LLC a 501c3 organization.
In December 2017, John developed what he thought might be the flu. It was diagnosed as an upper respiratory infection and was prescribed an antibiotic. After several weeks, the symptoms didn't go away and he went back to the doctor's office. The second diagnosis was bronchitis and was prescribed prednisone. The illness never went away. January 2018, he flew a helicopter 4 hours from Madison, WI to Louisville, KY. The drive back to Madison was 8 hours. He coughed on and off the entire drive back home. The next day, he went back to the doctors and they decided to take an x-ray. The x-ray showed he had a mass in his right lung. As a note, 9 months earlier he had a normal chest x-ray.
The end of January 2018, the Mayo Clinic in Rochester MN, performed a complete work up including PET Scans, CT Scans, Brain MRIs, Bone Scans, and blood work. On February 1, 2018 at age 67, John was diagnosed with stage IV non-small cell lung cancer. Several weeks later, the genetic tests came back and the cancer was determined to be driven by the MET 14 skipping alteration.
His initial treatment was a combination of Carboplatin, Alimta and Keytruda every three weeks. John experienced all the normal side effects, including losing 65 pounds, half his hair, hearing loss, neuropathy on the bottom of his feet, no energy and a significant loss of red blood cells. He was given 2 units of blood to get his red blood cells back into range. After 4 treatment sessions, carboplatin was removed for his treatment due to tolerability. After a total of 5 months of mixed results, it was decided to have one additional treatment and look for a clinical trial. After the last treatment, the immunotherapy started to work and the tumors shrunk about one-third. Now John had to make the decision, whether to stay on the current treatment plan or go on the trial?
John decided to go on the Capmatinib phase 2 clinical trial July 2018. At first the tumors shrank, and then became stable. Targeted therapy returned his quality of life.
When not working on the MET Crusaders, John pilots his helicopter and airplane, boats on Lake Michigan, drives his motorcycles, and participates in local government, but most importantly spends time with family and friends.
Lauren S. Rosenthal, MPH, is the Director of the American Cancer Society National Lung Cancer Roundtable (NLCRT). She is responsible for directing, implementing, and evaluating long-term priority activities and initiatives, developing strategic concepts, and creating and maintaining high-level collaborative partnerships with key partners and NLCRT member organizations around shared goals.
Prior to joining the NLCRT, Lauren led the management of key regional and global health programs focusing on the American Cancer Society's global priorities and partnership initiatives, working closely with key policy and government stakeholders, funders, and cancer control partners internally and externally to promote women's cancer and non-communicable diseases programs. Lauren managed the American Cancer Society-founded Global Scholars Program, which allows high-achieving young professionals from Africa and India to hone their public health research, communications and advocacy skills with expert scientists, researchers, and advocates from the American Cancer Society.
Previously, Lauren was the Medical Affairs and Public Health Liaison from the Centers for Disease Control and Prevention, Center for Chronic Disease Prevention and Health Promotion, to the Preventive Health Partnership, a collaboration among the American Cancer Society, the American Diabetes Association, and the American Heart Association. The Partnership's aim was to stimulate substantial improvements in prevention and early detection of chronic diseases through greater public awareness about healthy lifestyles. In this role, Lauren managed the medical- and public health-related programs, communications, creation and promotion of health message materials, and relationships on a national platform.
Lauren holds a Master's degree in Public Health, with a concentration in epidemiology, from Emory University's Rollins School of Public Health and a Bachelor's degree in Biology from Kenyon College.
Job Titles:
- Member of the Officers Team
- Vice - President
- Executive Director of the Exon 20 Group
- President and CEO of ICAN
Marcia K. Horn is the president and CEO of ICAN, International Cancer Advocacy Network, https://askican.org/
At ICAN, Marcia is a research advocate who has directly navigated patient cases pan-tumor since the founding of the organization in 1996. She is also a molecular profiling advocate, a clinical trials matching advocate, an expanded access program advocate, a public policy advocate, and a health equity advocate.
Since March 2017, Marcia has served as the Executive Director of the Exon 20 Group (https://exon20group.org/), an international multi-stakeholder coalition created to transform cancers caused by rare and lethal insertion mutations into manageable and survivable conditions. The Exon 20 Group provides more than 20 services to patients, care partners, and additional stakeholders and recently launched an International Research Consortium and Knowledge Bank project.
Marcia is one of the two research advocates selected for both the Stand Up 2 Cancer Molecular Early Detection of Colon Cancer Dream Team and the Stand Up 2 Cancer InTIME Dream Team for Lung Cancer Interception. She served for three years as DIA's inaugural chairman of its Patient Engagement Community and is a PCORI Ambassador. Marcia is a member of the ASCO TAPUR Study Molecular Tumor Board, the Banner Health Institutional Review Board, and the SWOG Early Therapeutics/Rare Cancers Committee. She is a research advocate for the National Cancer Institute's University of Texas Southwestern Medical Center Lung Cancer SPORE (Specialized Program of Research Excellence).
Marcia graduated Phi Beta Kappa from Stanford University in Political Science and received her JD from the Stanford Law School. Before joining ICAN, she practiced litigation and appellate law in Phoenix.
Sixteen years ago, an accidental finding showed that I had a tumor in my upper left lung. I had a lung resection followed by radiation and was cancer free until a routine CT scan showed that the cancer had spread to my liver. I have been on countless treatments including proton beam therapy plus six clinical trials. Along the way, it was discovered I had the RET mutation. That was great, however there wasn't a targeted therapy developed yet for RET. That changed in 2017 when I began my sixth clinical trial. Now, 4 years later, scans show no evidence of disease. I continue on this trial and hopefully will continue to stay NED.