The Team

Curiosity, deep love of learning, and a desire to give back to the lung cancer community led me to apply to the Citizen Science Program. I am here because of Research-it has not only extended my life, but also allowed me to move forward and live well. I look forward to learning more about the research side of things as well as contributing my perspective. Grateful for this opportunity.

Research is what gives me hope and options as someone living with lung cancer. With a KRASG12D mutation, I’ve seen how limited treatments once were and how progress is only possible because of continued research. Being part of this program allows me to bring the patient perspective into research while expanding my own understanding. I look forward to connecting with other patients and researchers, sharing my experience, and helping ensure future advancements better reflect the needs of those of us living with this disease.

I joined the LUNGevity Citizen Scientist Program to deepen my understanding of the research shaping lung cancer care and to contribute meaningful, patient-centered perspectives to the future of treatment and innovation. I’m passionate about clinical research, survivorship, and ensuring lived experiences help inform better outcomes.

I was diagnosed with stage IV non-small cell lung cancer with a HER2 mutation in November of 2024. Having a rare mutation, I know how important research is to not only my future, but the future of those just like me. I joined the Citizen Science program so that I can skillfully lend my voice to comparative effectiveness research, representing all young adults living with lung cancer. I live in western Massachusetts with my husband/caregiver and our 4-year-old son.

I’m excited to join the Citizen Scientist Program and deepen my understanding of current research. My goal is to use this knowledge to support cancer research advocacy and contribute meaningfully to patient education.

I was first diagnosed with stage 1 NSCLC in 2015. In 2021, it progressed to stage 4, and biomarker testing revealed it was KRAS G 12 V, which I was told had no target treatment at the time. In my mind, stage 4  Cancer  & no treatment = Death. However, through my KRAS community, Lung Cancer advocacy, and doing my “own research, “ I no longer feel that way.  Research and treatment in  KRAS Lung Cancer have grown exponentially since I was first diagnosed. I jumped at the chance to join Lungevity’s Citizen Scientist program to learn about lung cancer research so that I can share this valuable information with others in the community.

I’m joining the LUNGevity Citizen Science Program to honor my father’s memory and to help change the future of lung cancer care. By actively contributing to patient-driven research, I want to ensure other families benefit from patient-centered care. Ultimately, I look forward to participating in a program that will guide me in finding a path to make a difference.

I came to lung cancer advocacy through my sister, who was diagnosed with Stage 4 NSCLC five years ago. Watching her navigate that, remembering my grandmother’s fight with lung cancer, and then facing my own cancer diagnosis, gave me a firsthand understanding of what patients need and what gets in the way. No other disease carries the stigma or the disparities in diagnosis and care that lung cancer does, and I want to help change that.

I wanted to participate in the Citizen Science program because research really does matter and is extremely important. Research is the reason that I have been able to make it this far throughout my cancer journey. I want to be able to contribute as a research advisor, and continue to learn how to be a better advocate across the cancer research ecosystem.

As a long-time lung cancer advocate, I am extremely excited to be a part of the Citizen Scientist program. I became an advocate after my mom was diagnosed with Stage IV NSCLC in 2008. I wanted to be a member of the program because I wanted to learn how to best serve the lung cancer community and to learn more about new developments so I can become a better advocate.

I was critically ill with stage 4 cancer this past winter, and after I became stable I decided that I wanted to be an advocate for fellow lung cancer patients and give back to the community. The Citizen Scientist program sounded like the perfect opportunity to empower myself and others.

I joined the Citizen Science program to deepen my understanding of the research side of lung cancer. I’m excited about the opportunity to partner with LUNGevity as a citizen scientist and to learn more about what this role entails. Thank you for putting this program together—I’m truly looking forward to the journey ahead.”

After I was diagnosed with lung cancer, I soon discovered there wasn’t a treatment for my mutation. Research became my lifeline. I am currently in my fourth clinical trial. Patient advocacy and especially patient research advocacy motivated me to participate in Lungevity’s Citizen Scientist program. Learning about all aspects of research will help me to be a better advocate.

Research is a major factor that gives us hope and options to continue living well with lung cancer. Being a part of this project allows me to help researchers focus on different aspects of a patient’s journey as well as expand my own knowledge about lung cancer. What I am looking forward to the most, is to connect with other patients and medical professionals while sharing my own personal journey.  Connections are everything in the cancer world and I am grateful for this opportunity!

Aussie married to a Greek-American who loves to travel and hike or sit at home with a pot of coffee and a good book. Using her PhD in Measurement Science, Bellinda wants to know how lung cancer has impacted your quality of life & ensure caregivers are seen.

I grew up in the Bronx, but now, as a retiree, I live in Ann Arbor, MI with my identical twin. I started my career at U of Texas in Austin as a cognitive psychologist studying human memory, but took a number of interesting twists and turns before retiring and spending a good deal of time doing cancer research advocacy.

Originally from New York State and then NYC, but I now reside in Boston with my husband and 2 young boys. I love qualitative research as I’m naturally curious about people’s stories. My connection to lung cancer is also personal as my dad has been living with SCLC for over 5 years.  I am thrilled to be working alongside patients and care partners in the Citizen Science program as we engage in lung cancer focused Comparative Effective Research.

I am a recent MPH graduate from the UNC Gillings School of Global Public Health and am originally from Charlotte, North Carolina. I am passionate about advancing lung cancer research and helping improve the lives of patients and families affected. I enjoy reading books in my free time!

Brief bio: 79 year old Florida native diagnosed with Stage IV non-small cell lung cancer 12 years ago, who worked full time as an independent tax consultant for ten years after diagnosis, before retiring and becoming more involved in advocacy, lung cancer awareness, patient and family advisory responsibilities, and review of research proposals. We need to be seen as people, just like everyone else, and not as cancer patients/survivors.

Pierre Onda, MD, is a retired primary care physician and co-founder of The White Ribbon Project, a grassroots nonprofit dedicated to promoting lung cancer awareness and changing the public perception of the disease. He and his wife, Heidi—an advanced-stage lung cancer survivor—are passionate about building community through collaboration and advocacy. In his free time, Pierre enjoys numerous outdoor activities, painting, reading, and spending time with his grandchildren.

(Really retiring this year!) UCONN biology lecturer and former caregiver to husband Dave, who would have something to say.  I try to say it for him. 6-year Bostonian, Grammy-in-residence (yay duplex); family, including my lung cancer advocacy family, mean everything to me.

An Assistant Professor of Cardiothoracic Surgery Department of at New York-Presbyterian/Weill Cornell Medical Center. Dr. Villena conducts translational Immunotherapy research at Weill Cornell focusing on lymph node directed immunotherapy. Beyond the lab and operating room, Dr. Villena-Vargas is a dedicated mentor, guiding the next generation of aspiring medical professionals. When he’s not advancing science or mentoring students, you’ll likely find him enjoying a friendly match on the soccer field or tennis court with his wife and son.

Mindy is a thoracic medical oncologist in Cleveland, who changed careers to medicine after her parents were diagnosed with lung cancer 6 months apart in 2007. Her research has been driven by how to keep her mom, a Stage III survivor of almost 20 years, spry enough to keep spoiling her son (and her mom’s only grandchild).

Indian by roots, currently living in Oxford and always on the lookout for cozy cafés and good conversations. Physiotherapist turned global health researcher, Rasika is passionate about making patient voices central in research and policy. Diagnosed with lung cancer at 26, she now leads support programs in India to ensure no patient feels alone in their journey.

First generation Filipina American that loves to travel and be by the ocean as much as she can. Diagnosed at just age 28 and three months of diagnosis delay. Aurora also loves connecting with others via social media. Aurora recently finished her EdD in Leadership and Special Education.

An Associate Professor with Tenure in the Division of Medical Oncology/Department of Internal Medicine at The Ohio State University (OSU), Comprehensive Cancer Center and The James Cancer Hospital/Solove Research Institute. Dr. Presley currently leads studies focused on maintaining functional independence and improving fatigue, quality of life, and survivorship care among older adults with lung cancer. Her favorite hobbies are spending time with her husband, two daughters, and rescue dog, playing tennis, and gardening.

A 16+ year breast cancer survivor, serves as the Chief Programs Officer for the National Breast Cancer Coalition (NBCC). Joining NBCC in July 2018, she brings more than 25 years of experience in education and training development, program evaluation, research/analysis, and complex project management. Michelle also serves as a patient advocate representative of NBCC’s Artemis Project, the Breast Cancer Scientific Advisory Committee for Translation Research in Oncology (TRIO), and is an advocate founding member of the Common Sense Oncology initiative.