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 2021 Patient Research Advocates

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Headshot of Aliye Bricker Smiling

Aliye Bricker

Patient Research Advocate 

United States

Aliye Bricker, MD, was a full time Neuroradiologist at the Cleveland Clinic Foundation, mother to a 4-year-old and just days after delivering her second daughter she was diagnosed in December 2015 with widespread stage 4 non-small cell lung cancer at the age of 34. Starting maternity leave off with platinum doublet chemotherapy, gamma knife radiation to her solitary brain metastasis and pleurex catheter placement, she took a leave of absence from medicine to spend as much time with her family as possible.  During this time, she found that her cancer was driven by an abnormal RET fusion, however there were no targeted therapies available at the time.  After her cancer started progressing a year and half into chemotherapy, she tried (and failed) immunotherapy and then a multikinase inhibitor weakly targeting RET, developed liver mets and started second line chemotherapy prior to enrolling in a phase 1 trial for a first of its kind selective RET inhibitor – which she remains on today, now 5.5 years from diagnosis. 

In early 2021 Aliye built the website and co-founded the patient advocacy group RETpositive.org to advocate for those impacted by RET driven malignancy, to increase awareness of recently approved therapies and the clinical trials available, and to ultimately to help advance RET specific medical research.    

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Headshot of Sarah Christ

Sarah Christ

Patient Research Advocate 

United States

Sarah Christ was diagnosed in December of 2016 with stage 4 non-small cell lung cancer (EGFR+), which had metastasized to her liver and brain.  After several cycles of chemotherapy, as well as radiation to six small brain metastases, she is currently thriving on her second targeted therapy.

While continuing to work seasonally as a tax preparer, she is now proud to serve as an advocate for the lung cancer community.  She has served for three years as a consumer reviewer in the Lung Cancer Research Program through the Department of Defense and as a committee member and team captain for the Breathe Deep NYC walk to benefit the LUNGevity Foundation.  She is also a LifeLine Support Partner through LUNGevity.  She has attended two LUNGevity Summits in Washington, DC, as well as two National Advocacy Summits with the GO2 Foundation for Lung Cancer.

Sarah lives with her wife and children on the beautiful east end of Long Island and can usually be found in the garden or on the beach.

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Headshot of Seamus Cotter - wearing glasses and blue shirt in front of a white background

Seamus Cotter

Patient Research Advocate 

Ireland

Seamus Cotter is the father of two boys and a girl, was diagnosed with stage 4 non-small cell lung cancer in June 2016. An aviation industry employee for 30 years, the diagnosis was devastating for Seamus and his family. His consultant at the time was a principal investigator for a clinical trial for immunotherapy treatment, and luckily Seamus met all the prerequisites to go on the trial and was selected for the trial arm with dual immunotherapy treatment. After 8 months of treatment, his scans showed no measurable disease, and that situation continues to this day.

As a result of the connection with Cancer Trials Ireland, Seamus became involved with their Patients Consultant Committee and sits on the lung disease-specific subgroup (DSSG). Because of his engagement with researchers and oncologists, he was drawn into co-founding the first Irish lung cancer patients support group, the Irish Lung Cancer Community (ILCC). Seamus also volunteers as a patient representative in the “Lung Cancer Patient Advisory Group” for the European Lung Foundation (ELF) and has been invited by the EMA to participate as a patient representative in a “Scientific Advisory Group in Oncology” to discuss a new medicine intended to treat NSCLC.

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Tiffany Fagnani

Patient Research Advocate 

United States

Tiffany Fagnani is a Registered Nurse Case Manager who manages medically complex patients and a Stage IV EGFR positive lung cancer survivor.  Her journey began July 27, 2017, when she was getting ready to go to work and wasn't feeling well.  The year prior to her diagnosis Tiffany was the primary caregiver to her brother who was struggling with effects of cerebral palsy.  Tiffany thought her weight loss, constant fatigue, and migraines were due to her increase in caregiving responsibility, however, this was all related to lung cancer that had spread to her brain.  Tiffany went through a craniotomy which was followed with three cyber knife radiation treatments and began her 1st line targeted therapy.  In December of 2018, there was progression and she was started on the 2nd line treatment of targeted therapy.  Tiffany had remained stable and completed 5 consolidative therapy treatments to her lung. In July 2020, she is currently considered stable disease. 

Tiffany wanted to make an impact on the lung cancer community and turn her diagnosis into something positive to help others.  She currently has been featured in her cancer center's magazine in helping to reduce stigma, LUNGEvity article and CURE Magazine discussing effects of COVID-19 and dealing with Lung Cancer.  Tiffany is also a Lifeline Mentor and serves on the committee for GO2 Philly 5K, participated in LUNGevity Breathe Deep and was the featured speaker at her 1st walk. Recently, Tiffany has been working with the chair of her cancer center's research lab to become more involved in the science of lung cancer.  

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Leslie LaChance

Patient Research Advocate 

United States

Leslie LaChance is a freelance writer and educator. She has written and collaborated on literary projects online and in print media, on technical documents in the life sciences, book manuscripts, and articles for publication in academic journals. Leslie coaches emerging writers and students in developing an online presence via ePortfolio and provides manuscript consultations on works in progress.

Leslie was diagnosed with Stage IV ROS1-driven lung cancer in 2017. She has been a participant in a clinical drug trial, donated tissue for a patient-driven cell line project, raises funds for three lung cancer nonprofits, and offers support to newly diagnosed cancer patients through her participation in various patient-support groups. Leslie is active with the ROS1ders (a patient advocacy group for people affected by ROS1 cancer) and Gilda’s Club of Middle Tennessee. She is a consumer reviewer for the Lung Cancer Research Program.

Prior to her diagnosis, Leslie was a tenured Professor of English at The University of Tennessee at Martin and served on the faculty at Volunteer State Community College. She lives in Nashville, Tennessee with her husband, where she blogs about living with lung cancer at www.SojournandStardust.blogspot.com    

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Nabanita Mandal

 Patient Research Advocate

India

Living in India, Nabanita had just entered college with a big hope and new ambition but had to stop after two months. She faced more than one month of fever and cough, not responding to common medicines with weight loss, body ache and persistent itching. X-ray showed a tumor close to the lung, pleural effusion, and pericardial effusion.  Biopsy from her neck swelling proved that it was cancer. After 4 cycles of chemotherapy, a PET scan showed unchanged pleural effusion and pericardial effusion. Her oncologist continued the same regimen and she completed 12 cycles of chemotherapy, while suffering lot of physical problems, and radiotherapy for one month. Following a 4th PET, scan it was established that Nabanita’s disease was in remission. 

During Nabanita’s treatment she faced severe stress, fear, physical and mental problems. She was able to overcome all the problems except one: social isolation. Because of her cancer, neighbors, friends, relatives all shunned Nabanita. There was fear of the cancer being contagious. 

Nabanita was fortunate to be diagnosed in time to receive appropriate and adequate treatment. Most of her countrymen in similar conditions are not as fortunate, because of their ignorance. It is her mission to bring awareness about early diagnosis, timely and proper treatment, and possible subsequent normal life of cancer patients. 


Nabanita is now a master’s student of social work. Additionally, she is working to support lung cancer patients in her surrounding area. Though this work is challenging, she is enjoying it because she can encourage and give hope to other cancer patients like her.

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Jacquelyn Nixon

Patient Research Advocate 

United States

Jackie Nixon is the Director of Marketing & Communications for Citizens Radioactive Radon Reduction (CR3), Publisher of CR3 News Magazine, and a Stage 1 lung cancer survivor. She is also a CR3 Pennsylvania State Representative Advocate committed to educating communities about radon and its lung cancer affects. Additionally, she holds an AS in Computer Technology and BS in Computer Science from Edinboro University and an AS degree in Art from the Art Institute of Pittsburgh. She is the CEO of ROIMarket Media LLC, established in 2010.

In 2015, Jackie was diagnosed with Stage 1 lung cancer by accident and with no symptoms. This led her to eventually find high levels of radon in her condo building. The revelation was the pivot point to her joining CR3 and creating and marketing the international radon publication, CR3 News Magazine, to “get the word out!” Her publication is read in the U.S., Canada, Europe, Africa, Asia and South America.

Jackie has shared her experiences and knowledge of the danger of radon at the International Radon Symposium hosted by American Association of Radon Scientists and Technologists, at regional EPA Stakeholders meetings, LungCAN and LungForce.  She has presented at many webinars hosted by various lung cancer and environmental organizations to help prevent future deaths and diagnosis of radon-related lung cancer.

“My entire being is now dedicated to letting others know that simple solutions to good health are obtainable through research and education.”

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Stella O'Brien

Patient Research Advocate 

United Kingdom

Stella O’Brien is a member of a NICE Health Technology Appraisal committee. NICE is the independent body that makes recommendations on the use of new medicines and treatments within NHS England and Wales. Many of these appraisals are for cancer treatments, including lung cancer, an area for which she has experience as an advocate and caregiver for family and friends.

 Stella is a patient and public voice member of NHS England’s ATMP Working Group (Advanced therapy medicinal products for the treatment of disease and genetic variations). The complexity of ATMPs and the development of histology agnostic treatments have revealed the need for new trial methodologies if patients are to benefit from accelerated access to these promising new treatments. Health Technology Appraisal bodies are updating their methods to respond to the reality that the emerging clinical and patient relevant evidence from these trials is immature by comparison to the more familiar trial designs. Payers will need post-licensing collection of evidence to confirm the value of these treatments to patients and society. As with conventional research trials, it is critical to advocate for patients’ involvement in designing the collection of real world data and outcomes that are meaningful to people living with lung cancer.

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Korina Pateli-Bell

Patient Research Advocate

Greece

Korina began her career at a young age, working in tourism and the shipping sector, while in 1988 she entered the Communication and Marketing field. She has studied Management at Deere, the American College of Greece, and completed her MBA in Marketing at the University of Leicester, UK. For almost two decades she has worked in the automotive industry, as Corporate Communications Director at FCA Greece, a subsidiary of Fiat Chrysler Automobiles. Korina undertook several demanding projects, which required effective resource management and coordinated multiple teams. 

During her professional career, Korina has implemented many CSR projects of social and cultural profile and she has collaborated with international and local organizations, gaining a number of corporate and personal distinctions. Korina also worked for 14 years in the Kiriacoulis Mediterranean Business Group (a leader in the maritime tourism industry with a dynamic presence in the development of marinas and real estate). 

In 2003 she married her beloved Simon Bell, with whom she has two children. From August 2019 until the moment Simon passed away from lung cancer August 2020, Korina stood by his side accompanying him in numerous radiotherapy and chemotherapy, transfusions, hospitalization, and trips abroad.

This journey gave her the strength to envision and implement the non-profit organization, Fair Life Lung Cancer Care. www.fairlifelcc.com Korina is the President of Fair Life Lung Cancer Care and since May 2021 is also member of the BOD, as Treasurer, for Lung Cancer Europe (LuCE).

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Angus Pratt

Patient Research Advocate 

Canada

Angus Pratt was diagnosed with male breast cancer in May 2018. In the work-up for treatment, oncologists discovered a large tumor in his lungs. This proved to be Stage 3C non-small cell lung cancer. After six weeks of chemo/radiation with curative intent, Angus started immunotherapy. At nine months, seeing metastasis, his treatment turned to targeted treatment based on EGFR+ mutation. He receives 3-month monitoring CT scans with no significant change. This indicating that the treatment is working.

Angus continues his own freelance web design business. He pursues his creative interests through writing and watercolor art. Additionally, he is active as a mentor on cancerconnections.ca - a Canadian Cancer Society online forum. He has produced three digital short stories on Scanxiety, Complexity of advocacy, and Ephemeral online death. He has participated in media campaigns around stigma of lung cancer, biomarkers, and effects of covid-19 on cancer patients.

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Andrea Redway

Patient Research Advocate 

Canada

Andrea is a lawyer who worked on international justice reform projects prior to her diagnosis.  In 2015, at age 47, Andrea was blindsided by a diagnosis of stage 4 lung cancer with metastases to several areas outside of her lungs.  Andrea was fortunate to have access to a new treatment, immunotherapy, which has been very effective and enabled her to continue living a full and active life with her husband and two children. Through genetic testing in 2015, Andrea learned she has the RET mutation.  Recently, she has joined with fellow RET patients and caregivers to launch RETpositive, a new patient-driven group for RET positive cancers.

Andrea now works as an advocate for lung cancer patients with Lung Cancer Canada, the Canadian Cancer Survivors Network, the Ottawa Hospital, the Centre for Health Innovation and Merck Canada.  She is engaged in political advocacy at the provincial and federal levels to advocate for better access to lung cancer screening, diagnostics, treatments, and research.  She also organizes awareness and educational programs for lung cancer patients, a 2K walk for lung cancer and is one of the administrators for the first Facebook group for Canadian lung cancer patients.

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Mike Smith

Patient Research Advocate 

United States

Mike Smith, father of two teenage daughters and a son, was diagnosed in September 2016 with stage 4 EGFR lung cancer at the age of 51.  Mike experienced chest pain and a subsequent chest x-ray resulted in identification of a mass in right lung, collapsed lung and a 2cm tumor in his brain.  Mike’s lung cancer journey has included multiple radiation treatments, stereotactic radiosurgery (SRS) radiation, bronchoscopy, tumor ablation, a craniotomy, clinical trial participation and ongoing targeted therapy treatment.      

Mike works in financial services, enjoys spending time with his wife and children, including vacations, football, dance and volleyball.  Mike continually focuses on health, work and family activities, and is engaged in volunteer activities including IASLC STARS, Department of Defense’s CDMRP peer review panel, American Lung Association (NC Board Member and SC Lung Force Hero), Lung Cancer Initiative of North Carolina (Survivor Committee), Live Lung, Live Strong, EGFR Resistors, South Carolina Cancer Alliance, local Church Cancer Ministry, Knights of Columbus and lung cancer mentor programs through Lungevity, Atrium Health / Levine Cancer Center and Wind River Cancer Retreats.     

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Bärbel Söhlke

Patient Research Advocate 

Germany

Bärbel Söhlke, a mathematician, was diagnosed with advanced non-small cell lung cancer in 2008 and experienced various treatments and repeated relapses until comprehensive molecular diagnostics were performed by the lung cancer group in Cologne, Germany. Her tumor was found to harbor the rare ROS1 translocation. Subsequent targeted therapy resulted in significant clinical improvements and a complete tumor remission for more than eight years to date.
 
She is engaged in the global group of patients and caregivers dealing with ROS1-positive cancer, “The ROS1ders” – and is a co-founder of the German ROS1ders – that strives to increase awareness and education, accelerate research, and improve access to effective diagnosis and treatment. 

In 2020 she co-founded the German non-profit patient network for personalized lung cancer treatment “zielGENau e. V.” which covers all lung cancer mutations and collaborates closely with the national Network Genomic Medicine (nNGM). The goals include improved patient health literacy, nationwide comprehensive molecular testing, better personalized therapies for patients with advanced lung cancer, and patient-centered research. 

As a patient representative, she is involved in various projects, committees and advisory boards mainly related to genomic cancer medicine. She is currently working on a project to implement systematic patient participation in cancer research in the German health system.

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Diane Van Keulen

Patient Research Advocate 

Canada

Raised on a mixed farm in southwestern Ontario, it was a natural progression for Diane to enter an agricultural program at the University of Guelph. Upon graduation, Diane worked for a major feed company providing nutritional programming and animal health product information for the livestock farmers of Ontario. Much of her career involved the sharing of information to staff and sales personnel, and this steered her back into university to acquire a teaching degree focusing on Science and Mathematics for intermediate students in elementary schools with the Toronto and Durham Boards of Education.

Her lifelong passion for horses led her to build a private riding stable and arena near Beaverton, Ontario. Diane completed certification with EAGALA and began using her horses in a specialized program to assist clients who required something more than traditional therapy to improve the quality of their lives.

On March 28, 2019, Diane received the devastating news that she was suffering from Stage 4 Lung Cancer and has been on the journey of her life since that time. Forced to quit her teaching career and her equine business, she has concentrated on learning about treatment options and resting and healing the best that she can. Currently on her fourth cancer treatment, as the previous ones failed to halt the progression of her tumors, Diane remains hopeful and looks forward to participating in Lung Cancer Advocacy work as her health allows.
Read more about her lung cancer journey HERE.

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Wayne Yeung

Patient Research Advocate 

United States

Wayne Yeung is married to his wife Rebecca, who is a stage 4 lung cancer survivor. She has been fighting cancer since November 2017 and has been remarkable during this journey. She is currently on her 7th line of therapy. Together, Wayne and Rebecca have learned so much along the way. She has KRAS G12D mutated cancer, and up until 2020 she could not find many people that have a similar condition. However, last year, Terri Coneran created the KRAS Kickers support group and now over 400 members have joined, and it's been a blessing to find so many people that are similar. Since joining the KRAS Kickers, Wayne has been active in helping other newly diagnosed survivors navigate their cancer journey. 

Wayne is grateful to be accepted into the 2021 STARS program because he feels there is a huge knowledge gap between what is communicated between the oncologist and the patient. He hopes to close this gap and share that information with the members of their support group so they can empower themselves when they must make decisions down the road. Wayne also hopes to bring issues from the cancer survivors back to STARS program with the aim this will lead to better treatments.

Laura Book, United States, EGFR Resisters Board 

Lisa Briggs, Australia,  Lung Foundation Australia

Anne Marie Cerato, Canada

Diane Colton, Canada 

Terri Conneran, United States, KRAS Kickers  

Caleb Eqwuenu, Nigeria 

Tomma Hargraves, United States, UNC-Chapel Hill's Cancer Hospital 

Erika Hlavacek, United States, YEAHbestlife 

Lily Huang, New Zealand 

Kimberly Lester, United States 

Anita McGrath, Australia, Thoracic Oncology Group of Australasia; Australiasian Lung Cancer Trials Group 

Christine Qiong Wu, Canada 

Debera Violette, United States, Free ME from Lung Cancer Foundation 

Tom Wood, Australia, Lung Foundation Australia 

 

Andrew Ciupek, United States, GO2 Foundation for Lung Cancer 

Melissa Crouse, United States, EGFR Resisters

Merel Hennink, Netherlands, Longkanker Nederland 

Lillian Leigh, Australia, Cancer Australia 

Susan McCullough, Australia  

  • Susan McCullough, Australia 
  • Kimberly MacIntosh, Canada
  • Caleb Egwuenu, Africa — Move Against Cancer Africa
  • Shelly Engfer-Triebenbach, USA — ALKFusion
  • Laura Greco, USA — ALKFusion
  • Lillian Leigh, Australia
  • Jill Hamer-Wilson, Canada
  • Dusty Donaldson, USA — LiveLung & LungCAN
  • Upal Basu Roy, PhD, MPH, USA — LUNGevity
  • Jill Feldman, USA — EGFR Resisters