On Thursday 11 May our Consumer Advisory Panel (CAP) met in Sydney – welcoming five new members to the Panel and farewelling two longstanding members – Dan Kent and Joe Levin.
Established in 2008, the CAP comprises of GI cancer survivors, patients and carers. All CAP members volunteer their time and play a critical role in providing a consumer perspective and advice to the AGITG on general research directions and priorities as well as identifying unmet needs in the community.
The CAP now welcomes Jeff Cuff, Autumn Tansey, Brian Wall, Gillian Worden, & Grant Baker as new members to the group.
Dan Kent has stepped down after nine years on the CAP. Dan served as Chair of the CAP since July 2011. Dan has however been elected on to the AGITG Board of Directors, and as such will continue to play an important role for the organisation in providing a voice for survivors, patients, carers and families.
Jan Mumford steps in to the CAP Chair role after serving as Deputy Chair for the past two years. Robin Mitchell has been appointed Deputy-Chair of CAP.
Our five new CAP members bring a breadth of personal experience with GI Cancer and will offer an invaluable contribution to this already strong and well established advisory panel. See below for more on the experiences of our five new CAP members.
“In December 2009 my wife Shirley was diagnosed with late stage colorectal cancer, despite many treatment options we lost Shirl on the 20th July 2013. After visiting many research facilities to discuss what research was happening, particularly in colon cancer, I became linked to the Walter and Eliza Hall Institute of Medical Research. It was here that my interest in cancer research advocacy including the consumer advisory panel started.”
Jeff has established The Shirley Cuff Cancer Research Foundation in memory of his wife.
“I was diagnosed with gastro-oesophageal cancer on my 43rd birthday, four days after my wife was diagnosed with colorectal cancer. This meant my experience of cancer is as a patient, survivor, and carer. As part of my treatment I went through 28 rounds of radiation, four rounds of chemotherapy and then underwent the Ivor Lewis surgery where they removed half my stomach, ten centimetres of my oesophagus and my gall bladder. My wife also went through radiation, surgery and chemotherapy. We have both been clear for almost four years and live a happy healthy and positive life.”
“My partner/husband passed away from stomach cancer in 2013. He participated in clinical trials and I understand the importance of clinical trials and giving back for the benefit of others.
If I can contribute something, which can benefit future research or other families going through what we did, I will feel like something positive has come out of our experience.”
First diagnosed at 22 years of age, Autumn is a survivor of stage 3 colorectal cancer. She also has been diagnosed with Lynch Syndrome (HNPCC) – MSH2 mutation. She has been involved over the years as a member of the Victorian & Tasmanian Youth Cancer Advisory Board (YCAB) and also has been involved with CanTeen as both a member and a Youth Programs Leader.
“I wish to use my personal experience as a voice and influence in the direction and promotion of GI research. I am particularly motivated by the experience as an AYA patient and to share this in the field of GI cancer. I wish to offer something back to the community, as I have been gifted so much through my cancer experience.”
“In August 2016 I was diagnosed as having a stage 2A tumour in my ascending colon after failing the national screening test. The tumour was removed by keyhole surgery and further testing (clear nodes, MSI, BRAF, etc) did not suggest I should have chemotherapy. I have therefore, only modest experience at the patient end of this disease, although the diagnosis of CRC focusses one’s mind on it quite considerably.
Although my experience as a health consumer is not extensive, I have worked in the health system all my life, including as General Manager of Public Health Services for Health Dept. of WA. As such, I have a good understanding of what makes a difference and, usually, how to make it. I well understand the difficulties consumers have in negotiating their way along the cancer journey. I have a strong commitment to improving cancer (and other) care and would like to continue to make a contribution, especially having now been on “both sides of the fence”.
Picture above left to right: Dan Kent (retired CAP Chair), Brian Wall, Autumn Tansey, Gillian Worden, Christine Bishop, Grant Baker, Jan Mumford (current CAP Chair), James Armstrong, Robin Mitchell (CAP Deputy-Chair), Jeff Cuff, Julie Marker, Joe Levin (retired CAP member)