The ROS1ders PRIME Summit 2026
Patient and Researcher Interaction for Mutual Education
Summit Schedule
Our Speakers
Physicians, Researchers & Experts
Upal Basu Roy PhD, MPH
Dr. Basu Roy is the Executive Director at LUNGevity Research where he spearheads LUNGevity’s Translational Research Programs and Patient-Focused Research Center (Patient FoRCe). He has implemented and manages LUNGevity’s patient-focused research including Project Transform, a multi-year, multi-stakeholder patient preference study that LUNGevity is conducting with Johns Hopkins University School of Public Health. Dr. Basu Roy also has extensive experience in community-based participatory research (CBPR) methodology in health sciences research, specifically in projects involving immigrants and minority populations.
Dr. Basu Roy has a PhD in Molecular and Cellular Biology from the University of Arizona, and an MPH in Global Health Policy and Management from New York University.
Andrew Ciupek
PhD
Andrew Ciupek, PhD, is Associate Director of Clinical Research at GO2 for Lung Cancer. Originally a translational cancer researcher, Andrew transitioned to patient-advocacy to have increased impact on driving patient-centered research. At GO2, Andrew leads implementation of patient-centric research both with external collaborators and within the organization’s Centers of Excellence (COE), a network of community and academic clinical centers focused on lung cancer early detection and treatment. He also serves as a navigator for the organization’s treatment and clinical trial navigation program, called LungMATCH, directly working with lung cancer patients and their caregivers to help them understand and access appropriate care options, empowering them to take an informed, active role in medical decisions.
Dr. Aaron Hata
MD, PhD
Aaron received his MD and Ph.D. degrees at Vanderbilt University in Nashville TN, where he studied the structure and function of prostaglandin receptors in the laboratory of Dr. Richard Breyer in the Department of Pharmacology. He completed an Internal Medicine residency at Brigham and Women’s Hospital in Boston, followed by a Medical Oncology fellowship at Dana Farber Cancer Institute and Massachusetts General Hospital. He performed his post-doctoral research in the laboratory of Dr. Jeffrey Engelman in the MGH Cancer Center, where he focused on understanding mechanisms of drug sensitivity and resistance to targeted therapies for lung cancer. In 2016, he joined the faculty of the Krantz Family Center for Cancer Research.
Dr. A. John Iafrate
MD, PhD
Anthony John Iafrate, MD, PhD, is the Austin L. Vickery, Jr. Professor of Pathology and Deputy Chair of Pathology at Massachusetts General Hospital, where he leads the Iafrate Lab. His research identifying ROS1 gene rearrangements in lung cancer led directly to the development of crizotinib as a targeted therapy. His lab also pioneered "anchored multiplex PCR" (AMP), a sequencing technique widely used to detect cancer-driving gene fusions.
Dr. Jessica Lin
MD
Jessica J. Lin, M.D. is a Clinical Assistant of Medicine at Massachusetts General Hospital and an Associate Professor of Medicine at Harvard Medical School. Dr. Lin leads the clinical efforts focused on ALK-positive lung cancer at MGH and is principal- or co-investigator of other clinical trials conducted by the thoracic oncology and phase I groups. She leads the efforts to establish a database of serial biopsies, obtained from newly diagnosed patients with advanced lung cancer or are progressing on current treatments. The primary focus of her research is to understand the mechanisms of resistance to targeted therapies using TKIs in oncogene-driven lung cancers, such as those harboring ALK, ROS1, or RET gene rearrangements. Her efforts are essential not only in informing novel drug development in order to overcome or prevent resistance, but also in guiding how clinicians might strategize the sequential administration of available therapy options for patients.
Dr. Geoffrey Liu
MD
Geoffrey Liu, MD, is Professor of Medicine at the University of Toronto and a clinician-scientist at Princess Margaret Cancer Centre, following training at the University of Toronto and a fellowship at Dana-Farber/Harvard Cancer Center. His research focuses on molecular prognostic factors and pharmacogenomics in lung and esophageal cancer, with over 350 peer-reviewed publications. He leads dozens of NCI- and Canadian-funded studies applying machine learning and epidemiologic methods to personalize cancer care.
Dr. Misako Nagasaka
MD, PhD
Misako Nagasaka, MD, PhD is an Associate Clinical Professor and the Hamoui Salous Endowed Chair in Thoracic Oncology Research for the Division of Hematology/Oncology, Department of Medicine at the University of California Irvine. She completed her residency in Internal Medicine at Beth Israel Medical Center in NYC and fellowship at Karmanos Cancer Institute in Detroit. Her clinical and research interests are in molecular targeted therapy and immunotherapy in thoracic malignancies, with a special focus in medical ethics. She has more than 200 publications including the New England Journal of Medicine, Nature Medicine, the Journal of Clinical Oncology and the Journal of Thoracic Oncology. She has experience serving as the site principal investigator (PI) for over 20 interventional trials (and has served as a sub-investigator for a number of studies) and enjoys collaborating with other researchers across the country and around the world.
Dr. Alice Shaw
MD, PhD
Dr. Shaw is Chair of the Department of Medical Oncology and the Chief of Strategic Partnerships at Dana-Farber. She is also the George P. Canellos, MD, and Jean S. Canellos Professor of Medicine at Harvard Medical School. She was previously Vice President and Global Head of Translational Clinical Oncology at Novartis. Prior to Novartis, she was the Director of the Center for Thoracic Cancers at MGH, the Paula O’Keeffe Endowed Chair of Thoracic Oncology at MGH, co-leader of the Harvard Cancer Consortium Thoracic Oncology Program, and Professor of Medicine at Harvard Medical School. Dr. Shaw received her MD and PhD degrees from Harvard Medical School. She did her residency in Internal Medicine at MGH and completed a fellowship in Hematology/Oncology at the Dana-Farber/Harvard Cancer Center (now Harvard Cancer Consortium). Her areas of expertise include oncogene-driven lung cancers such as ALK- and ROS1-positive lung cancer, resistance to targeted therapies, and experimental therapeutics.
ROS1ders
Diane Yang
PhD
Diane is a postdoctoral fellow from Dr. Iafrate's lab, developing a new type of inhibitor for Lung cancer treatment.
Lysa Buonanno
Lysa is a proud mom and grandma, a 15-year lung cancer survivor, and patient advocate who firmly believes that life's best days often end with a bike ride to the beach.
Simon Barsoum
Simon Barsoum is a Montreal-based disability management and workers’ compensation specialist, with a healthcare background in physical therapy, as well as a dedicated patient advocate and lung cancer survivor.
In 2022, at the age of 42, Simon was diagnosed with a rare form of ROS1-positive non-small cell lung cancer. This unexpected diagnosis profoundly reshaped his personal and professional journey and moved him to be a passionate voice for patient-centred care. He actively volunteers as a patient partner in his local healthcare network and on a national cancer committee, where he advocates for integrating the patient perspective into clinical practice, research, and policy. Drawing on both his clinical background and lived experience, he brings a unique and deeply informed perspective to discussions on cancer care and survivorship.
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Jennifer Crawford
Jennifer Crawford is Senior Director of Multiplatform Partnerships for The Walt Disney Company. In this role she oversees brand marketing efforts for TWDC’s entertainment networks: ABC, FX, The Disney Channels, Nat Geo and Freeform across all distribution partners including Apple, Amazon, Roku, Comcast, YouTubeTV, and DIRECTV
She was diagnosed with ROS1 in November of 2024. She has been on Entrectinib since March 2025 after chemo and radiation and is under the care of Dr Matthew Lee at City of Hope in Duarte.
Janet Freeman-Daily
Janet Freeman-Daily is a writer, speaker, and international cancer research advocate who translates the
experience and science of cancer for others. She was diagnosed with metastatic NSCLC in 2011, learned
about biomarker testing and clinical trials from online patient communities, joined a clinical trial, and
has been doing well on a targeted therapy since 2012. She is co-founder and president of The ROS1ders
and a co-founder of the IASLC STARS program for training research advocates in lung cancer. She has
received the LUNGevity Hero award, coauthored articles in oncology journals, been an invited speaker at
national and international cancer conferences, and served on committees and scientific advisory boards
for cancer centers, nonprofits, industry, and government agencies. Formerly an aerospace systems
engineer, she holds engineering degrees from MIT (SB) and Caltech (MS, Engineer). Janet blogs at
GrayConnections.net.
Lisa Goldman
Lisa is a cancer patient/advocate. She was diagnosed with ROS1+ Stage IV NSCLC in 2014. In addition to co-founding The ROS1ders, she is a member of the Pfizer Lung Cancer Steering Committee and a Patient Advocate for the Lung Cancer Foundation of America. She speaks at medical conferences around the world and blogs at Every Breath I Take. Lisa enjoys drawing and painting and teaches professionally as a Certified Zentangle Instructor. She previously worked as a fitness instructor and lawyer.
Joyce Hoelting
Joyce Hoelting is the lucky wife of ROS1der patient Jeff Wynne. In order to enjoy the riches of spending time with Jeff years after his diagnosis, she retired from a career at the University of Minnesota Extension in 2021. Now, she consults part-time, volunteers for the ROS1ders, enjoys family and friends, travels frequently with Jeff and, of course, makes doctor's appointments and cooks healthy meals.
Luna Okada
Luna is a 13+ year survivor of ROS1-driven NSCLC. Diagnosed at age 54, she tested negative for the gene variants associated with lung cancer at that time. Starting on traditional IV chemotherapy, she transitioned to a targeted therapy in early 2013 when she was found to have a ROS1 variant. She has been fortunate to continue on this original oral chemotherapy since, with minimally treated progression.
Luna is a wife, mother of two adult children and grandmother of two grandsons. She is a retired pediatric and prenatal genetic counselor and credits her professional background with helping to navigate the complex medical and insurance landscapes of cancer care. Luna feels tremendous gratitude for her family, friends, healthcare team, the lung cancer community and its advocates and most of all, research.
Amie Parker
Amie Parker is the Chair of the 2026 ROS1ders PRIME Summit and a member of The ROS1ders’ Board of Directors. A former elementary teacher, Amie holds a Master of Education degree and currently works as a Technology Integration Specialist, providing professional learning and support to adult educators as they incorporate technology into teaching and learning.
Diagnosed with stage IV ROS1+ lung cancer in 2017, Amie combines her experience as an educator, patient, and advocate to help make complex medical and research information more accessible to the ROS1+ community.
She also co-founded the Lungbuster 5K, which raises funds for ROS1 cancer research.
Tahsin Hassan Rahit
Tahsin’s cancer journey began at age 27 on December 14, 2021, following more than six months of misdiagnoses. At the time, Tahsin was pursuing a PhD in artificial intelligence focused on diagnosing rare genetic disorders. Tahsin completed the degree, published scientific papers, received research awards, and now works as a postdoctoral researcher at North America’s second-largest cancer facility in Calgary, Canada.
Tahsin believes innovation matters only when patients can access it. Modern medicine made these accomplishments possible, but not every patient is given the same opportunity. Through research and advocacy, Tahsin works toward a future in which patients can access the best available treatments, live well, pursue their goals, and continue contributing to society.
Susan Wood
Susan was diagnosed with stage IV ROS1- positive lung cancer in June 2017. Susan is a retired high school math teacher after having taught for 32 years. She still tutors high school students and plays tennis and mahjong in her free time.
Full Session Descriptions
Patient & Caregiver Meetup
Wednesday, August 12 | 4:30–6:00pm | Duxbury | Patients & Caregivers
There's no agenda here — just an open room and open time. Whether you're attending your first Summit or your fifth, this is a low-pressure way to put faces to names, reconnect with people you've met online, and settle in before things kick into gear on Thursday. David Chill will be on hand to greet arrivals and help break the ice.
Community Welcome
Thursday, August 13 | 9:00–10:30am | Grand Ballroom | Patients & Caregivers
This session exists because the people in this room understand something no one else quite can. Before the full conference begins, patients and caregivers get dedicated time and space to connect with each other first — no agenda beyond introductions and honest conversation. Hosted by Janet Freeman-Daily, Joyce Hoelting, and Luna Okada, it sets an intentional tone: this Summit is built on relationships, not just information.
Official Opening
Thursday, August 13 | 11:00–11:30am | Grand Ballroom | All Attendees
This is the moment the whole community — patients, caregivers, researchers, and clinicians — comes together in one room for the first time. Janet Freeman-Daily and Amie Parker will cover what to expect over the next three days, share opportunities to get involved during the conference, and walk through how to submit questions and engage in discussion using the Padlet platform used across all Summit sessions.
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Who Are The ROS1ders?
Thursday, August 13 | 11:30am–12:30pm | Grand Ballroom | All Attendees
Before diving into the science, meet the organization behind it. Janet Freeman-Daily and Lisa Goldman — both founding members — trace how The ROS1ders came together, what drove its founders to act, and how the organization has grown to support patients and fund research. You'll also hear where the group is focused right now and what's ahead.
ROS101
Thursday, August 13 | 1:30–2:30pm | Grand Ballroom | All Attendees
Dr. Geoffrey Liu, a senior scientist at Princess Margaret Cancer Centre and longtime lung cancer researcher, breaks down the fundamentals of ROS1+ cancer in plain language: what the ROS1 gene and its fusions are, where they've been found in the body, how tissue and liquid biopsies work, and what a TKI actually does. He'll also cover the range of available ROS1 TKIs, how they differ by country, mechanisms of acquired resistance, common side effects, the use of adjuvant TKIs in stage III NSCLC, and how clinical trials fit into the picture. Amie Parker closes the session with a quiz to reinforce what you've learned.
Living with ROS1+ Cancer: Patient Panel
Thursday, August 13 | 2:30–4:00pm | Grand Ballroom | All Attendees
No textbook can capture what it's actually like to live with this diagnosis — so we asked five people who know firsthand. Moderated by Jennifer Crawford, this panel gives Lysa B., Simon Barsoum, Luna Okada, Tahsin, and Susan Wood the floor to share their individual journeys, from diagnosis through treatment and beyond. The conversation then opens to questions gathered ahead of time and from the audience live.
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Decoding ROS1+ Research
Thursday, August 13 | 4:30–5:30pm | Grand Ballroom | All Attendees
Research headlines can be exciting, confusing, or misleading — often all three at once. Amie Parker walks through how to distinguish credible science from hype, how to actually read a research study once you've found one, and what common abbreviations and chart types (like Kaplan-Meier curves) are telling you. You'll leave with a printed research checklist designed to help you navigate new information confidently.
Cocktail Reception
Thursday, August 13 | 5:30–6:30pm | Adrienne Salon & Ballroom Foyer | All Attendees
After a full day of programming, take a breath and unwind with fellow attendees over passed nibbles and drinks. The reception features a cash bar stocked with both alcoholic and non-alcoholic options, so there's something for everyone regardless of preference. Thank you to Nuvation Bio for their generous support in making this evening possible.
Patient & Caregiver Breakfast
Friday, August 14 | 7:30–9:00am | Grand Ballroom
Seating is intentional here: tables are marked for caregivers and for patients at different points in their journey (0–5, 5–10, and 11+ years), with discussion prompts to spark conversation between people at similar — or very different — stages. Other attendees are welcome to pick up food and eat in the Duxbury room.
Keynote: "How Far We've Come, How Far We'll Go" presented by Dr. Jessica Lin
Friday, August 14 | 9:00–10:00am | Grand Ballroom | All Attendees
Dr. Lin treats patients with lung cancer and other thoracic malignancies at MGH and researches driver oncogene alterations and resistance to targeted therapy, with a particular focus on ALK- and ROS1-positive disease. In this keynote, she'll cover the current treatment landscape for ROS1+ cancer and share where the field is headed, including emerging therapies still in the pipeline.
Group Photo / Break
Friday, August 14 | 10:00–10:30am | Adrienne Salon & Foyer
Wear your conference t-shirt today if you have one — we'll be taking group photos in different groupings right after the keynote wraps up. It's a fun, low-key break before the MD Panel gets underway.
Treating ROS1+ Cancer: MD Panel
Friday, August 14 | 10:30am–12:30pm | Grand Ballroom | All Attendees
The PRIME Summit — Patient and Researcher Interaction for Mutual Education — exists for moments like this one. Dr. Jessica Lin, Dr. Misako Nagasaka, and Dr. Alice Shaw bring decades of combined experience in oncogene-driven lung cancer to a wide-ranging conversation moderated by Janet Freeman-Daily. Expect discussion of targeted therapy, clinical trial access, mechanisms of drug resistance, biomarker testing, and where ROS1+ cancer care and research are headed — plus direct answers to questions from Summit attendees.
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The ROS1ders Research Projects
Friday, August 14 | 1:30–2:30pm | Grand Ballroom | All Attendees
Patient-funded research is one of the most direct ways this community moves science forward. Upal Basu Roy — who, beyond his ROS1ders board role, leads the research strategy for LUNGevity Foundation — and Janet Freeman-Daily walk through the projects The ROS1ders has supported to date, what they've contributed to the field, and what new research is on deck.
Wellness: Creating a Mantra Sigil
Friday, August 14 | 2:30–3:30pm | Grand Ballroom | All Attendees
A sigil is a simple visual symbol — something you can sketch in seconds — designed to anchor you to a calming phrase or mantra of your choosing. Whether you're managing scanxiety, the stress of presenting, or just the emotional weight of the week, Lisa Goldman guides all attendees through creating their own sigil: a small, portable tool for moments that call for a reset.
Laboratory Research Panel
Friday, August 14 | 4:00–5:30pm | Grand Ballroom | All Attendees
Dr. Aaron Hata's lab studies how lung cancers develop resistance to targeted therapies, including ROS1-driven disease, with the goal of designing the next generation of treatments. Dr. A. John Iafrate has been central to developing the diagnostic tests that identify ROS1 fusions in the first place, work that helped pave the way for targeted treatment as a standard of care. Moderated by Janet Freeman-Daily, this session offers a rare direct line to the scientists doing the foundational work behind your treatment options.
Conference Dinner
Friday, August 14 | 5:30-7:30pm |Grand Ballroom | All Attendees
Before the meal begins, James R. Porter, Ph.D., CEO of Nuvalent, will share a few remarks to kick off the evening. We're grateful to Nuvalent for sponsoring Friday's conference dinner, giving attendees a chance to unwind, reflect on the day, and connect with fellow attendees over a shared meal.
Wellness & Connection
Wellness doesn't look the same for everyone. Whether you find calm in stillness, movement, or conversation, we've created three ways to start your morning — choose whichever fits how you recharge.
Saturday, August 15 | 9:00–10:00am
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Option 1: Wellness Walk
Hyatt Lobby | Amie Parker
Prefer to move? Join Amie for a gentle group walk through some of Boston's prettiest scenery. We'll meet in the Hyatt Regency lobby at 9 am and walk about 5 minutes to Boston Common, then continue through the Common, cross into the Public Garden, and circle the lagoon before heading back to the hotel. Total walking time is roughly 30–40 minutes, plus time to pause for photos or conversation along the way. Restrooms and benches are available along the route, and you're welcome to turn back early at any point if you'd prefer a shorter distance. Comfortable shoes recommended — weather permitting, of course.
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Option 2: Sound Bath Healing
Grand Ballroom | Dr. Joann Toporowski, Psy.D., Certified Sound Therapy Facilitator
Dr. Toporowski blends her background as a psychologist with her work as a sound therapy facilitator, using singing bowls, chimes, a tongue drum, an ocean drum, and gongs to create an immersive, meditative experience. The session opens and closes with brief guided meditation, with the sound bath itself washing over you in between — no experience or preparation needed, just a comfortable place to sit or lie down. Attendees often describe leaving these sessions feeling calm, centered, and ready for the day ahead.
Option 3: Connect & Unwind
Duxbury | Janet Freeman-Daily
Looking for something low-key? Join The ROS1ders President Janet in the Duxbury Room for coffee, casual conversation, and puzzles — a relaxed way to connect with fellow attendees at your own pace. Drop in anytime that works for you and stay as long as you like — no need to arrive right at 9 or stay the full session.
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The Many Forms of Advocacy
Saturday, August 15 | 10:30am–12:00pm | Grand Ballroom | All Attendees
There's no single way to be an advocate. This panel brings together Upal Basu Roy, Andrew Ciupek of the GO2 Foundation for Lung Cancer, and Janet Freeman-Daily to explore the different shapes advocacy can take — from sharing your story to shaping research priorities to influencing policy. If you've ever wondered how to turn your experience into action, this is the session for you. As the final session open to researchers, clinicians, and partner organizations, Janet Freeman-Daily will close things out with a few remarks — a proper send-off before the Summit moves into its patient- and caregiver-only closing hour.
We Are 1ders
Saturday, August 15 | 12:00–1:00pm | Grand Ballroom | Patients & Caregivers only
This closing session mirrors the very first: patients and caregivers gather one more time to reflect on the Summit as a whole — the science, the stories, and the relationships formed along the way. It's a chance to name what you're taking home with you, and a reminder that the ROS1ders community doesn't end when the conference does.
ROS1der Swag on Zazzle
Show your support for The ROS1ders of the world by purchasing some ROS1der swag on Zazzle. Profits from the sales of these items support the ROS1ders' research and education goals.
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