Eva Backman is the current chairman of the Swedish Cancerföreningen (Cancer Association) PALEMA – an umbrella organization that covers upper gastrointestinal cancers. She is a 5-year locally advanced pancreatic cancer (LAPC) survivor and two times cancer caregiver having lost two husbands to cancer.
Eva is also a member of the newly formed DiCE Patient Advisory Committee.
‘Norwegian by birth and Swedish by love’, she is a mother of two, and a grandmother of three. Her working life included two parallel jobs, a life-time occupation as a tour guide along with close to 30 years in the Aviation Industry, of which the last 10 years were on a strategic level – mostly with aviation safety and security-quality assurance.
It is with this same work attitude that Eva manages her own cancer journey, one that she describes as her “hardest job ever – having to be my own project leader in my own fight for survival. A daunting task in a totally unfamiliar landscape and with a language of its own”. You can hear her own account of this journey in this video interview.
Wanting to be a voice of all those patients who are unable to speak up for themselves, she believes “We must and can do more – and we shall do it together”.
Dr Karl Smith-Byrne is a Research Fellow at Green Templeton College and Senior Molecular Epidemiologist at the Cancer Epidemiology Unit, University of Oxford. In this role, he co-leads the metabolomics and proteomics research programme into the aetiology of prostate cancer, among others, using an integrative multi-omits approach.
Additionally, Karl conducts research into aetiology and risk prediction for various cancer outcomes within the Million Women Study. He also co-leads proteomics as part of a large European initiative, DISCERN, that focuses on understanding the causes of pancreatic, renal, and colorectal cancer.
He worked previously at the Genomic Epidemiology Branch of the International Agency for Research on Cancer in Lyon, France. While there Karl focused on implementing multi-omic methods to better understand factors contributing to the aetiology, early detection, and prognosis of various cancers.
Lasma is an early-onset rectal cancer patient. She was diagnosed with bowel cancer in 2019 at the age of 33. She is a cancer patient with basic medical training; she has a tertiary education in nursing. Her other qualifications are master’s degrees in philology and environmental sciences.
She has been involved in patient advocacy since 2023. She is a representative of digestive cancer patients in the Latvian association of cancer patient organisations Onko Alliance, and a member of the colorectal cancer patient organisation Europa Colon Latvia.
Since the beginning of her work as a patient advocate, she has cooperated with Digestive Cancers Europe in various activities. She is also one of the patient advocates in the patient advocacy organisation Inspire2Live. As a young cancer survivor, she has become an ambassador for the EU Network of Youth Cancer Survivors (EU-CAYAS-NET) project.
Being part of the GUIDE.MRD Patient Advisory Board is a new and valuable experience for her, helping her to grow as a patient advocate. At the same time, it is an opportunity to share her own insights from the perspective of a young colorectal cancer patient.
Founder, Stichting Merels Wereld
Merel Hennink, wife and mother of 2, was diagnosed with stage IV NSCLC in November 2014. She started targeted therapy to treat her ROS1+ lung cancer 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 for 100%.
Early 2015, she became active in the Patient Advisory Board of Longkanker Nederland (Dutch Patient Organisation), 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, an European umbrella organization of Patient Organisations) and also represents Longkanker Nederland in the Global Lung Cancer Coalition (GLCC). She had presentations 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, the Hanze University of Applied Sciences started a research course ´Merels Wereld´ in 2017. Stichting Merels Wereld together with the Hanze University of Applied Science and the University Hospital Groningen, initiated, created, funded and implemented a ROS1 research program.
Every year she gives lectures to (medical) students about the engaged patient and the benefits to collaborate with them.
Patrycja Rzadkowska is a psychologist and works professionally as a Customer Relationship Manager for an international company. In addition to psychology, she is a psycho-oncology graduate. She also works voluntarily for the DiCE Member organization EuropaColon Poland and through this has become a European Cancer Organization Patient Advisory Committee Member, a member of Pancreatic Cancer Europe and a member of the DiCE Patient Advisory Committee.
In 2017, she was diagnosed with pancreatic cancer and after successful treatment, she decided to share her story with others. She is passionate about helping and supporting those around her and this is her reason for volunteering and getting involved in different initiatives focused on oncology. These activities “make her life meaningful” she says.
Through her experience, commitment and expertise she hopes that she will have the capacity to fully concentrate on helping and supporting oncological patients in the future.
Co-founder & President, Codice Viola
Piero Rivizzigno, Laurea in Electronics Engineering at Padua University, Applied Mathematics and System Modelling academic research. Co-founder and President of Codice Viola, an Italian pancreatic cancer advocacy group committed to creating awareness and changing the status quo of pancreatic cancer treatments in the Italian healthcare system. Member of the scientific committee of the CECOG Pancreatic Cancer Conference, member of the Validation Group for the European Guidelines on Minimally Invasive Pancreatic Surgery, and member of the FAVO Lombardia Committee. Very keen on the transformational impact of digital technologies in the healthcare system.
Stephen Rowley is an interdisciplinary scientist and artist, who worked on internet security in the 1980’s – with much of this preliminary work still in place today. He is also an active musician and visual artist. He works to integrate the arts with his knowledge of science and mathematics, particularly in education.
Stephen received the shocking diagnosis of colorectal cancer in 2015, he survived, but his brother Damon sadly succumbed to the disease three years later. This experience provided the impetus for him to put his creative skills into cancer support.
With cancer rehabilitation having helped him to recover his life after treatment, he took on the role of developing a network of rehab offerings in his community. As a result of his activities in this field he was recruited to represent cancer patients in local and regional health authorities.
The appearance of the COVID pandemic brought the realization for him that it would close down many cancer support groups, but that it would not slow down cancer itself. With this in mind, he established the national online Bowel Cancer Support Group UK, which has now become a large and active network that is now working with the UK National Health Service (NHS) to explore possible collaborations.
Stephen continues to work internationally and regularly participates in the Inspire2Live World Campus. As DiCE PAC member he offers his creative input towards moving patient support forward on a European level.
Vincent de Jong
Vincent de Jong lives in The Netherlands and has a professional career in the Finance Industry as Risk Manager, Compliance Officer and Data Protection Officer.
Despite applying a healthy lifestyle (non-smoking, non-drinking, non-overweight, vegetarian diet) he was diagnosed with two primary GI cancers in 2015 at the age of 42. Next to a low grade mucinous neoplasm of the appendix (LAMN) a highly aggressive stage IV CRC was found.
Despite a dismal outlook, two surgeries (including the challenging HIPEC) and 6 months of chemotherapy brought both diseases in full remission!
As a coping strategy he is determined to learn as much about the disease as possible, but becomes frustrated with the information available in The Netherlands for patients. At entry level the data is quite good and easily accessible, but patients who want to learn more about things like genetics, complementary treatments or clinical trials have to resort to the pessimistic Dr. Google and the confusing nurse-practitioner Wikipedia.
He strongly believes that patient organizations and peer-to-peer networks (like the Facebook community “Colontown”) have a major role to play in educating and empowering patients.
He joined DiCE member organization Stichting Darmkanker Nederland in 2019 and has been involved with a number of DiCE projects.
He is co-author of a study evaluating a Dutch online tool for both physicians and stage IV CRC patients that aids the process of shared decision making, like the trade-off between quality of life and life expectancy.