Team eDyNAmiC’s patient advocates are integral to the team. We are fortunate to work with talented, committed, and passionate advocates who bring a wealth of knowledge and diverse skills to the team. As with all teams, we have team members transition and move on to the next opportunity–our patient advocate team is no different. As we enter the final 3.5 months of year 3, we thank two patient advocates who have moved on from team eDyNAmiC–Chris Curtis and Shirin Khalili. Chris and Shirin provided invaluable input and contributions to team eDyNAmiC, and we are grateful to them. We wish them all the best as they continue on in their advocacy work with The Swallows Head & Neck Cancer Support Charity (Chris) and as a EUPATI Fellow (Shirin).
Team eDyNAmiC patient advocates remain committed to working side-by-side with investigators and Future Leaders (early career researchers) to translate and communicate the pioneering work of team eDyNAmiC. Please allow us to reintroduce the patient advocate team.
David Arons
David is the CEO of the National Brain Tumor Society, an organization dedicated to research, advocacy, and patient support and committed to finding a cure for brain tumors. David is an attorney by training with a personal and deep commitment to advocacy and fighting cancer. He served on the Blue Ribbon Advisory Panel to advise the CancerMoonshot and serves on the National Cancer Institute’s (NCI) Childhood Cancer Data Initiative Steering Committee. From 2013-2019, David served on the NCI Council of Research Advocates and Clinical Trials Advisory Committee. His work with the NCI Glioblastoma Working Group led to the development of the GBM Therapeutics Network to accelerate clinicaltrials. David and NBTS have collaborated with Drs. Mischel and Verhaak since 2013 supporting research that defined the critical role of ecDNA in brain cancer. When he’s not advocating for patients, families, and survivors, David enjoys spending time with wife and children.
Dave Chuter
Dave is no stranger to advocacy. He is an oesophageal cancer survivor, his life-saving oesophagectomy in 2006 was the moment that started his journey into patient support and cancer research. Dave’s lived experience will inform and guide Team eDyNAmiC investigators. Dave put it to us plainly at an early Team meeting when he asked, “Where’s the hope?” Dave will ensure that hope is at the forefront – not only hope for a cure but hope in our messaging and communication. He will ensure the patients’ journey is woven into the research and that Quality of Life & Patient Wellbeing are key objectives. Above all, he will ensure that patients’ and caregivers’ voices are heard as equal partners. Just a few of Dave’s affiliations include, roles as the Digestive Cancers Europe (DiCE) Vice-Chair of the Board, Chair of the DiCE Patient Advisory Committee, Advisory Group member of use MY data, and National Institute for Health and Care Research (NIHR) Academy PPI member. Outside of advocacy work, you’ll find Dave tending to his fruit and vegetable allotment, snapping pictures of the seaside, serving as local Parish Councillor and organizing the local village fete, and above all, Dave enjoys being on the beach with his grandchildren.
Andrew Lang
Andrew is based in the UK and previously worked as a General Manager in large-scale wholesale distribution in the UK. Following a diagnosis of Bladder Cancer, he underwent a Da Vinci robot-assisted radical cystoprostatectomy in 2015 and remains free of cancer but continues to be monitored. As a survivor, he continues to stay in touch with the everyday concerns of the bladder cancer community through the members-only Facebook pages of the UK-based charity Fight Bladder Cancer. He believes there is an important place for the layperson in the process of communicating complex research to the general population and would like to help.
After listening to the “Fireside Chat” between lead Patient Advocate, Dave Chuter, and investigator, Mariam Jamal-Hanjani, he is inspired to offer his support to Team eDyNAmiC. He will seek to keep an open and receptive mind as he learns about the research aims; indeed, he relishes the challenge.
Katell Maguet
Katell is a French researcher based in the Netherlands. She is a scientist at heart, passionate about working with data and innovative approaches. Over the years, her focus has shifted from numbers to understanding and improving people’s experiences.
In 2021, at the age of 40, she was diagnosed with Stage 3 colorectal cancer. Through three years of treatment and seven surgeries, her quality of life was profoundly affected. Along her patient journey, she faced various challenges, including the low awareness of early-onset colorectal cancer, the complexity of navigating the healthcare system and the difficulty of obtaining timely information.
She chose to become a patient advocate, aiming to give a voice to both patients and medical teams. By blending her multidisciplinary background with her personal experience as a patient, she aspires to make a significant impact on the patient’s journey.
Katell is a EUPATI Fellow (Cohort 7) and collaborates with Digestive Cancers Europe (DiCE) and Inspire2live, a cancer foundation empowering patients, researchers and clinicians to work together to prevent, treat and eliminate cancer. Being a member of Team eDyNAmiC perfectly aligns with her mission.
