Amanda Stork is a Consumer Advisory Group member of NeuroEndocrine Cancer Australia and a participant in the INCA Boot Camp for Research Patient Advocates.
Why did you enroll in the INCA Boot Camp, Amanda?
My motivation to enroll in the INCA Boot Camp stemmed from a desire to learn more and to be able to share the knowledge gained in the Boot Camp with other patients. Being diagnosed with an uncommon cancer is scary at any age – I was 29 and pregnant at the time of my diagnosis but had suffered with symptoms for about 7 years prior to the diagnosis. I am naturally drawn to education and learning and chose a proactive approach, learning as much as I could about NET cancer at the time of my diagnosis. This helped me cope with the challenges NET cancer causes patients.
Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?
Since 2016 I have been very fortunate to be part of the Consumer Advisory Group for NeuroEndocrine Cancer Australia. This marvellous organisation is the only NET cancer medical charity providing support, education, awareness and advocacy to NET cancer patients in Australia. It has been wonderful to have connected with this organisation, which was created to give neuroendocrine cancer patients, their families and friends, a voice in the community and access to the care and treatment they deserve.
And what is the most important thing you learned from the webinar this month?
I have learnt so much already in the few months being part of the INCA Boot Camp, however the last webinar raised so many important discussions around quality of life for NET cancer patients. There are no two stories, symptoms or outcomes quite the same for patients, but the fact remains a person’s quality of life needs to be measured and considered appropriately. It is important for the patient voice to be heard and for this data to be collected to offer better quality outcomes for all patients.