STARS Participants

Our inaugural group was comprised of patients and mentors from around the globe. The exchange of information, increased familiarity and comfort with research, and formation of new mentor—mentee relationships have inspired the participants to share their new knowledge with their respective patient support groups.

Stars Participants 2020 - Mentors

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Melissa Crouse

Melissa Crouse

Founder of the RET Renegades

United States

Melissa Crouse, a mother of three grown children and grandmother of six, was diagnosed with Stage IIA NSCLC Adenocarcinoma in August 2005.  It was an accidental finding during a required physical. There wasn’t any targeted therapy or extensive biomarker testing in 2005, so Melissa underwent an upper left lobe lung resection followed by six rounds of chemotherapy. Two-and-a-half years later it was discovered that the cancer had metastasized to her liver. She’s had multiple lines of chemotherapy, radiation, proton beam radiation and is on her sixth clinical trial. Currently, she is NED.

Melissa retired from her teaching job in 2016 when her cancer progressed, and she was enrolling in her sixth clinical trial. She established a local lung cancer support group and founded the RET Renegades. She’s a patient consumer reviewer for the Department of Defense’s CDMRP peer review panel and sits on panels of several large pharmaceutical companies. She has appeared in numerous print and media, even earning an Emmy Award for a documentary featuring her.
 

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Susan McCullough

Susan McCullough

Lung Cancer Advocate

Australia

In 2003, Sue McCullough, was diagnosed with Stage 1 Lung Cancer, type adenocarcinoma. After a few complications with her lobectomy, she went looking for answers and support.

She had no luck finding support in her area for people with lung cancer, so she helped form the first face-to-face lung cancer support group in Australia; it is still running today.

Since 2004, Sue has been an active advocate/consumer for people with lung cancer. Being a lung cancer advocate involved in policy change, as well as clinical research as a consumer representative, is a major part of her life now. She was awarded an Order of Australia in 2019 for her work in lung cancer advocacy. She is linked with a number of researchers and cancer research organizations, giving them the patient perspective on research projects.
 

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Merel Hennink

Merel Hennink

Patient Advisory Board of Longkanker Nederland

Netherlands

Merel Hennink, wife and mother of 2, was diagnosed with stage IV NSCLC in November 2014. She started targeted therapy for her ROS1 fusion and is still, with great results, on her 2nd TKI since 2016. Until April 2020, she worked as a program manager and a teacher at the University of Applied Science Groningen. But as advocacy work became more structured, she decided to put her time and energy in the service of her family and advocacy fulltime.

In early 2015, Merel became very active in the Patient Advisory Board of Longkanker Nederland (Dutch patient organization), to be a face and a voice of lung cancer in the Netherlands. In 2018, she also became an ambassador of Lung Cancer Europe (LuCE, a European umbrella organization) and represents Longkanker Nederland in the Global Lung Cancer Coalition (GLCC). She has presented on diverse platforms and is active in diverse global patient councils.

To get more educated about her own driver mutation, she became active in the Global Initiative of the ROS1ders in 2015. In her own country, she started the foundation, Stichting Merels Wereld to raise (European) awareness about ROS1, and to get research done. As a result, her employer, the Hanze University started a research course ´Merels Wereld´ in 2017, and together with the University Hospital Groningen, they made a ROS1 research program. Every year she gives lectures to (medical) students about the engaged patient and the benefits of collaborating with them.
 

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Lillian Leigh

Lillian Leigh

Cancer Australia’s Advisory Council

Australia

Lillian Leigh is an Australian lawyer and a lung cancer patient research advocate. She was appointed by Australia's Federal Health Minister in 2018 to Cancer Australia’s Advisory Council, where she also serves on the CEO's Research and Data Advisory Group as well as the PdCCRS Grants Review Committee. 

As a research advocate, Lillian sat for four years on the Consumer Advisory Panel and the Management Advisory Committee of Lung Foundation Australia's Australasian Lung cancer Trials Group (ALTG).  Recently, Lillian left to join the inaugural Board of the Thoracic Oncology Group of Australasia, which is a new collaborative organization dedicated to clinical trials and translational research in lung and other thoracic cancers.  Lillian is also a research advocate with Woolcock Institute’s Lung Cancer Research Network which focuses on preclinical and translational research in lung cancer. 

Lillian is a proud member of the ROS1ders and has contributed to its patient-driven research initiatives. She is also a patient advocate for Rare Cancers Australia, Cancer Voices NSW and Cancer Council NSW. In 2016, Lillian received the Patient Advocacy Award at the WCLC 2016. She was a mentor with IASLC's first Supportive Training & Advocacy in Research and Science (STARS) Program at WCLC 2019. 
 

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Ivy Elkins

Ivy Elkins

Co-Founder of the EGFR Resisters

United States

Ivy Elkins is one of the co-founders of the EGFR Resisters, a patient-driven initiative to understand and improve treatments for EGFR+ lung cancer through collaborations with researchers and advocacy groups. She is a dedicated advocate for lung cancer research, having served six times as a consumer reviewer for the Department of Defense Lung Cancer Research Program, twice completed the AACR Scientist-Survivor program, and acted as advocate faculty for three years for the ASCO/AACR Methods in Clinical Cancer Research Workshop. In addition, Ivy serves on the Yale SPORE, the Patient Advocacy committee for IASLC, and the UChicago Medicine Community External Advisory Committee. She also writes for lungcancer.net and frequently shares her patient perspective with the media and with pharmaceutical companies involved in lung cancer treatments.

Ivy was diagnosed in December 2013 with EGFR+ stage IV lung cancer that had metastasized to her bones and brain. She has been treated at both the University of Chicago and Northwestern Medicine and lives in the Chicago suburbs with her husband Ben and her two teenaged boys. She has an undergraduate degree in English from Princeton University and a Master’s in Business Administration from the Wharton School at the University of Pennsylvania.
 

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Andrew Ciupek

Andrew Ciupek

Manager of Clinical Research at GO2 Foundation for Lung Cancer

United States

Andrew Ciupek is currently Manager of Clinical Research at GO2 Foundation for Lung Cancer. His early career was focused on laboratory-based cancer research; he spent several years in academia earning his Ph.D. from Baylor College of Medicine in Houston, Texas and participating in research at several other institutions including the Medical University of South Carolina and the University of Maryland’s Greenbaum Cancer Center. His lab-based research focused on understanding the biology behind resistance to various cancer therapies and discovering new therapeutic targets in cancer cells. During his time at Baylor, Andrew had the opportunity to work closely with an oncologist mentor at both a public “safety net” hospital and private clinic in Houston, meeting with patients and learning about the conduct of clinical research. Through these experiences, he became interested in how to achieve better patient-centering of clinical research and care and how to deal with issues of cancer disparities and health inequities, leading him to a career transition to patient advocacy. 
 
At GO2, Andrew leads implementation of research studies within the Foundation’s Care Continuum Centers of Excellence, a network of community and academic clinical centers focused on lung cancer early detection and treatment. He also leads evaluation of and acts as a navigator for their 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 their medical decisions.   
 

STARS Participants 2020 - PRAs

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Tomma Hargraves

Tomma Hargraves

Patient and Family Advisory Council, UNC-Chapel Hill’s Cancer Hospital

United States

Tomma Hargraves was diagnosed in November of 2006 with stage 3B non-small cell lung cancer, at the age of 58.  She had no symptoms.  She participated in an aggressive clinical trial at the University of North Carolina’s cancer hospital which included a new targeted therapy drug.  Only when she went out of remission three years later did she learn that she was EGFR positive.  Tomma has been through additional courses of treatment with chemotherapy, cyberknife and a craniotomy during the past 13 years, but her cancer is currently under control and she has no evidence of disease.

As part of Tomma’s lung cancer journey, she has been an activist and advocate for the Lung Cancer Initiative of North Carolina, and a participant in several national lung cancer conferences including ASCO.  She has been a speaker at state and national conferences including the 2019 American Association for Cancer Research Progress Report to Congress.  It was an honor to share her story as a long-time survivor of the number one cancer killer. She remains actively involved in programs at UNC-Chapel Hill’s Cancer Hospital as a member of the Patient and Family Advisory Council and as a volunteer patient navigator, working directly with oncologists, nurse navigators and researchers in assisting patients through their own lung cancer journey.
 

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Tom Wood

Tom Wood

Deputy Chair of the Lung Foundation Australia's Lung Cancer Advisory Committee

Australia

In 2016 Tom’s mum, Kym, was unexpectedly diagnosed with lung cancer, which was a huge shock. He soon became aware of the massive inequities that exist for people with lung cancer in Australia, including in services, support and research. Since then he has tried to advocate for better services and support for people with lung cancer by connecting with other patient and advocates, contributing to Facebook support groups, being involved in sector advisory groups and initiatives, research projects, and attending medical and scientific events, pushing for innovative and patient-friendly research and care. 

Tom is Deputy Chair of the Lung Foundation Australia's Lung Cancer Advisory Committee and was on the organizing committee of the 2020 Australian Lung Cancer Conference, helping organize significant consumer involvement and a community forum. He has previously sat on the University of Melbourne's Centre for Youth Mental Health Human Ethics Advisory Committee and been a member of the Walter and Eliza Hall Institute’s Consumer Buddy program.
 

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Laura Book

Laura Book

EGFR Resisters Board

United States

Laura Book, a former textbook editor and online marketing manager, was diagnosed In August 2016 with stage 4 non-small cell lung cancer at the age of 64. A year earlier, a nodule had been found in her left lung. A bronchoscopy was negative and routine scans showed no change. Laura had suffered severe neck pain throughout that year, and finally found the source of her neck pain when cancer was found in her C4 bone. The bone was removed and replaced, and biopsy showed EGFR+ adenocarcinoma of the lung with Del exon 19. She was started on erlotinib and remained on it for 3.5 years with very minor progression in the lung and occipital bone which were both treated with cyberknife radiation. A biopsy in May 2020 came back with T790M mutation, and treatment was initiated. 

About two years after diagnosis, Laura joined the patient advocacy group EGFR Resisters. She serves on their board and is responsible for the group’s monthly newsletters. Recently Laura completed the AACR Scientist-Survivor Research Program and was the WA state leader for the Day of Advocacy for the Go2 Foundation for Lung Cancer. Laura has also served as a consumer reviewer for the DOD CDMRP lung cancer program and is just completing her second round of lung cancer study reviews eligible for $14 million in grants annually. 

Laura is a dedicated advocate for lung cancer research and is an EGFR Resisters’ representative to LungCAN. She has a Twitter account dedicated to lung cancer (@LauraJBook) and communicates to her Congressional representatives regularly in AZ and WA about lung cancer awareness and the need for research. Laura is an avid reader of post-osimertinib and immunotherapy research and she scours the internet on a daily basis for new research articles. She looks forward to learning more about research and how to translate complicated studies into comprehensible bites to her lung cancer community members. 
 

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Terri Conneran

Terri Conneran

Founder of the KRAS Kickers

United States

Terri Conneran lives in Charlotte, North Carolina and is a married mother of three young adults. She was diagnosed with lung cancer in January 2017, just as her youngest child was finishing her bachelor’s degree. Shortly after Terri was diagnosed, the biomarker that caused her non-small cell adenocarcinoma was identified as KRAS biomarker. Unable to find a support group for others in a similar journey, Terri decided to create one. In December 2019, Terri founded the KRAS Kickers, a conduit network for patients and families in search of KRAS information and support. With a goal to “kick cancer’s KRAS!” the KRAS Kickers share stories and knowledge to give hope to each other. 

In addition to her work with the KRAS Kickers, Terri is a Board Member of the DustyJoy Foundation and is a member of LungCAN’s KRAS Biomarker Group and the National Lung Cancer Round Table. Terri loves to connect and share stories with others and says her priorities in life are faith, family, and to laugh and learn every day.  
 

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Lisa Briggs

Lisa Briggs

Lung Cancer Patient Advisory Group for Lung Foundation Australia Member

Australia

Lisa Briggs is a loving wife and mother of 2 young children (aged 6 and 8) who was diagnosed in 2014 at 32 years of age with Stage IV Lung Cancer (ALK Positive) 4 months after the birth of her second child. Due to limited options available in Australia at the time, Lisa commenced a Phase 3 Clinical Trial, with targeted therapy treatment and was a participant of this trial for 3 years. However, following the detection of asymptomatic brain metastasis in 2016, she began another targeted agent. 

Lisa’s professional background is in allied health; qualified as both a Doctor of Osteopathy and Exercise Physiologist. She owned and operated a Sports Medicine clinic for 8.5 years; however, following her diagnosis, Lisa ceased practicing and sold her business. She now devotes her time wholeheartedly to her family and lung cancer advocacy. She currently reviews grants for the Victorian Cancer Agency and works closely with researchers and research institutes as a consumer representative on several their grant applications.

Lisa was recently invited to be a member of the local organizing committee for the 2020 Australian Lung Cancer Conference and was an integral part in the inclusion of the patient voice throughout. She has been an invited keynote speaker at several cancer research conferences, symposiums and forums, and holds positions on steering committees including the Victorian Lung Cancer Registry, locally within her hospital, and for organizations such as Cancer Australia and Lung Foundation Australia. Lisa was the inaugural co-chair and now current member of the Lung Cancer Patient Advisory Group for Lung Foundation Australia and is passionate about challenging the diverse inequities in funding for lung cancer research. As a patient research advocate, Lisa hopes her voice and contributions can lead to better collaboration between all parties and ensure that the patient voice is always at the center of all the work that is done.
 

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Lily Huang

Lily Huang

Registered Nurse and Lung Cancer Advocate

New Zealand

Lily Huang, a mother of two girls, was diagnosed in November 2014 with stage 4 NSLC at age 51. After a few rounds of chemotherapy, her biopsy came back with a ROS1 mutation and she was lucky to be put on Pfizer’s compassionate programme. She took the treatment for 43 months before scans showed progression. She started her next line of therapy, also through Pfizer’s compassionate programme, in December 2018 and she remains on that therapy today. 

As a senior registered nurse specializing in Cardiac-Thoracic theatre, Lily never thought to give up her job and continues to work full time as one of NZs most experienced theatre nurses. Since the diagnosis and stabilization of her disease, she has been vigilant with sharing her personal lung cancer experience as well as educating on early screening and testing of LC with patients, scientists, and health professionals alike through multiple avenues. She is an advocate for the need of NZ to invest in lung cancer research. Despite being NZ's biggest cancer killer, lung cancer historically has received less than 5% of total cancer research funds per year. Lily remains an advocate supported by the LC foundation NZ to help raise much needed awareness and funds for lung cancer research.
 

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Kimberly Lester

Kimberly Lester

Technical Writer

United States

Since her mother's diagnosis with lung cancer in 2015, Kimberly has been an active and outspoken advocate for lung cancer awareness. Early on, she volunteered with several organizations, but, seeing a need, she and her mother started a small nonprofit for lung cancer awareness and education. She has organized many lung cancer awareness events and fundraisers but is currently focused primarily on a small network of support groups their nonprofit has started in several states. Kimberly leads a small lung cancer support group in Harrisonburg, Virginia. Their Foundation also supplies gift bags for newly diagnosed lung cancer patients in the areas where they have support groups. She also serves in an administrative capacity with LungCAN, an affiliation of all the major lung cancer nonprofits, and often helps with social media for both LiveLung and LungCAN. 

In her professional life, Kimberly works as a Technical Writer, which requires her to translate technical information into easily understood documents. She is hopeful this will be an asset in the STARS program, allowing her to use her skills to help educate others about new developments in lung cancer research and treatments.
 

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Erika Hlavacek

Erika Hlavacek

Founder of YEAHbestlife

United States

Erika Hlavacek, a 42-year-old mother, wife, and former airline pilot with no risk factors, was diagnosed in September of 2017 with stage IV non-small cell lung cancer. She initially had SBRT radiation to her spine, and then also found out she had a gene mutation driving her cancer called ALK. She started targeted therapy and is currently on her second line of treatment.

After her diagnosis, Erika recognized the need for patient advocacy in lung cancer due to a lack of government funding. She was part of Team IL for GO2 Foundation’s Capitol Hill Day and is a consumer reviewer for the Department of Defense’s CDMRP peer review panel.  She is also a board member for ALK Positive, a patient-driven advocacy and support group. Erika realized after diagnosis that she needed to live her best life every day. She started a non-profit called YEAHbestlife that reminds everyone to live their best life while raising funds and awareness for lung cancer research. 
 

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Diane Colton

Diane Colton

Business Owner, Consultant and Lung Cancer Advocate

Canada

Diane Colton is a business owner, consultant, learned she had lung cancer in November 2011. Fortunately (if any part of lung cancer diagnosis can be called fortunate) it was considered stage 1B and that meant surgery to remove the tumor. In June 2012 she was again diagnosed with lung cancer, but this time in her right groin. Radiation was chosen to treat this new cancer. Luckily the treatments worked, and the tumors shrank significantly.

Twice Diane had lung cancer and twice it was managed! By August 2019, she started having vision issues. After some tests (CT etc.), a brain metastasis had been discovered. A plan was devised for stereotactic radiation and again was fortunate that all it had taken was three consecutive treatments to put the tumor in its place.

When Diane was first diagnosed, she promised herself that if she lived, and no matter how long, she would work to make a difference in the world of lung cancer. Since then, she has held several events for awareness, organized her second fundraising gala earlier in 2020, is working on a brochure to leave at doctors’ offices about lung cancer and to have a digital version, as well. Lots more on the burner including helping other advocates in creating programs that they want and support them. 
 

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Deb Violette

Debra Violette

Founder of the Free ME from Lung Cancer Foundation

United States

Deb graduated from the University of Maine in Augusta with a degree in accounting. She retired from the State of Maine after 43 years of service. In 1998 she was diagnosed with stage III lung cancer at the age of 44.  After her treatment she began advocating and lobbying for more awareness and funding. To her it seemed logical to advocate since her entire career has been dedicated to public service.  In 2012 she founded Free ME from Lung Cancer Foundation.  Through her Foundation, she raises money for research and early lung cancer screening and helps single-family low-income homeowners get access to radon air abatement systems. 
 
Deb has sat on the Department of Defense CDMRP peer review panel and was one of the first advocates to do so.  She has served as patient advocate for the LungSPORE program on behalf of Dana Farber over 17 years.  Additionally, she has also sat on clinical trial boards serving as patient advocate, and sits on the Maine Lung Cancer Coalition advisor board.
 
When Deb is not working in her Foundation she serves as board secretary for Central Maine Striders; the oldest active running club in Maine. She also sits on fundraising planning boards for the Maine Humane Society of Waterville and an after-school French program.
 

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Christine Qiong Wu

Christine Qiong Wu

Lung Cancer Advocate

Canada

Christine Wu, a mother of three children, was diagnosed with Stage 4 ROS1+ lung cancer metastatic to the brain in June 2015. After four-months of chemotherapy, which was not successful, she changed treatment to targeted therapy. She is still on this same treatment plan.
 
Christine gave up her academic career to focus on her health. After her lung cancer and brain tumor stabilized, she became an active lung cancer advocate. She is a reviewer for the Research Committee of Lung Cancer Canada’s (LCC) grants. Christine also works with LCC to apply for lung cancer drugs (TKI) approved by the FDA. She also brings up the voice of lung cancer patients by being a contributor and moderator of Health Union in the USA. Christine has organized numerous conferences (currently Zoom meetings) and appeared in multiple articles on behalf of lung cancer patients both in Canada and internationally.
 

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Caleb Egwuen

Caleb Egwuenu

Research Advocate

Nigeria

Caleb Egwuenu has 8 years’ experience as a patient advocate and holds a bachelor’s in science in computer science from Madonna Univerity Okija, Nigeria. Up until 2007, he had a wrong perception about cancer. While growing up, Caleb lost his cousin and aunt to cancer and was told that the disease they died from was “a Whiteman’s disease.” He was told that they must have offended someone to get the disease in the first place. Sometime between 2007 and 2008, Caleb started searching for the truth and started meeting other cancer patients. When Caleb realized that the disease was not only for white men, but that anyone could have the disease, he thought about many young people who had been told the same myth.

Caleb decided to start a nonprofit with his friends who have also been affected by cancer one way or the other. With no experience at all, Caleb started organizing hospital visitations, where support and care were given to cancer patients. He also started awareness seminars and screenings to help educate people that early detection can indeed save lives. Caleb has since attended international conferences and trainings and presently he is a research advocate, trying to push research on cancer in his home country, Nigeria. Caleb and his team are in the process of analyzing data obtained from over 2,000 women that have been screened by the organization since 2008.
 

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Anne Marie Cerato

Anne Marie Cerato

Chair of the Patient and Caregiver Committee

Canada

Anne Marie Cerato, 42-year-old 11-year survivor of incurable lung cancer, was diagnosed in April of 2009. Initially diagnosed at 30 with Stage 3A adenocarcinoma, she underwent six months of treatment that involved multiple lines of therapy including radiation chemotherapy, and surgery. In 2011, she experienced a recurrence, prompting her to look into alternative treatments and clinical trials. In September of 2011, she was notified that she had an ALKeml4 fusion and began her first clinical trial for a novel TKI. After five successful years, she experienced a second recurrence and began her second clinical trial in 2016 for a third generation TKI.  

Anne Marie gave up a career as an educator when she began treatment, focusing on her health, pursuing her passion for travel, and spending time with her family. She became an advocate for both the young adult cancer community and the lung cancer community in Canada after recognizing a need for the patient voice. She has served on the board of directors for Lung Cancer Canada for 7 years, as well as acting Chair of patient programming, stepping down in 2020 to Chair the Patient and Caregiver Committee. She has co-authored two abstracts presented at the 2018 IASLC and upcoming 2020 conference. She has also served as a LocaLife leader for Young Adult Cancer Canada, is a consultant with Merakoi, is a public speaker and blog author of These Are My Scars, focusing on the patient experience and de-stigmatizing lung cancer.
 

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Anita McGrath

Anita McGrath

Consumer in research with the Thoracic Oncology Group of Australasia (TOGA) and the Australasian Lung Cancer Trials group (ALTG)

Australia

Anita McGrath, a mother of two young boys, was diagnosed in January 2014 with stage 3 non-small cell lung cancer at the age of 44. The diagnosis came after almost 2 years of looking for answers to a persistent cough. She began treatment with chemotherapy and radiation and was then found to have the ALK+ fusion and started on her first TKI. In August 2018, Anita progressed and moved to her second line TKI, which she is still on.

Anita became a lung cancer advocate soon after diagnosis with the aim to support others with lung cancer and raise awareness that anyone with lungs can get lung cancer. She has worked with many not-for-profit organizations and government health departments as a part of her advocacy and consumer representative work. More recently, she has focused on consumer rep work within the research field. She is a consumer in research with the Thoracic Oncology Group of Australasia (TOGA) and the Australasian Lung Cancer Trials group (ALTG).  
 

2019 PRAs

  • Susan McCullough, Australia
  • Kimberly MacIntosh, Canada
  • Caleb Egwuenu, Africa — Move Against Cancer Africa
  • Shelly Engfer-Triebenbach, USA — ALKFusion
  • Laura Greco, USA — ALKFusion

2019 Mentors

  • Lillian Leigh, Australia
  • Jill Hamer-Wilson, Canada
  • Dusty Donaldson, USA — LiveLung & LungCAN
  • Upal Basu Roy, PhD, MPH, USA — LUNGevity
  • Jill Feldman, USA — EGFR Resisters