We are privileged to have the expertise of three patient advocates who are equal partners on Team eDyNAmiC. Each brings their own lived experience as survivors, carers, loved ones, and advocates to the team. We would not be where we are without their invaluable input.
Together, David, Dave, and Shirin work to expand the group of patient advocates and guide eDyNAmiC investigators as they tackle the extrachromosomal DNA (ecDNA) Cancer Grand Challenge. We are forever grateful to them.
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.
Shirin Khalili
Shirin has a B.Sc. in Bacteriology from UW-Madison, a PhD in Molecular Biology from University of Edinburgh, and several years of postdoctoral research experience at Hellenic Pasteur Institute in Athens and at King’s College London. Following several years in the pharmaceutical industry in Denmark and Belgium as publication manager, scientific advisor, medical information content manager, and independent medical reviewer, she moved to France and became an independent consultant. Personal loss led her to become an advocate for esophageal cancer patients with an unfavorable prognosis. She completed a foundation course on the person-centred approach to death and dying (LWDW), became a European Patients’ Academy on Therapeutic Innovation (EUPATI) Fellow, and is looking forward to helping set up a palliative support group for esophageal cancer patients.
