Consumer Advisory Group

Our Consumer Advisory Group (CAG) is made up of volunteers from around Australia, who have been affected in some way by neuroendocrine cancer.

We are so grateful to this exceptional group who help guide NeuroEndocrine Cancer Australia’s activities, from a consumer perspective, and identify and help resolve unmet needs in our community.

Key activities of the group fall under five work streams:

Who are the Consumer Advisory Group?

NeuroEndocrince Cancer Australia CAG is made up of volunteers from around Australia, who have been affected in some way by neuroendocrine cancer. We are so grateful to this exceptional group of members who will help guide NeuroEndocrine Cancer Australia’s activities, from a consumer perspective, and identify and help resolve unmet needs in our community.

We are looking forward to working on some exciting projects with our CAG, and delivering more services to individuals with neuroendocrine cancer around Australia. Watch our news section for our latest updates.

We’re currently looking for a new Consumer Advisory Group Representative in Western Australia.

Could you be our next CAG representative for Western Australia?

We will be seeking expressions of interest.

Learn more about the role by clicking here.

Geoff Tomlin

TAS

Consumer Advisory Group (CAG) Member

I am very new to CAG, just a couple of meetings so far but have been involved in NeuroEndocrine Cancer Australia (NECA) projects developing the educational packages for medics and patients.

Lynda Dunstone

VIC

Consumer Advisory Group (CAG) Member

Hi, I’m Lynda and I live in Canberra with my husband, 4 leg fur child and have two wonderful adult sons. In 2010 I was diagnosed with a mass on the pancreas and liver mets. After 8 inconclusive biopsies, it was assumed I had Pancreatic Cancer and I was told to get my affairs in order. I had 15months of weekly IV chemo and basically lived scan to scan (monthly). Following a 2nd opinion, I pushed for further investigation and a GA68 scan. Finally, 2 years after my initial diagnosis and unnecessary chemotherapy, NETs were confirmed. During this time there…

Karen Vial

SA

Consumer Advisory Group (CAG) Member

When NECA asked if I may be interested in becoming a Consumer Advisory Group (CAG) volunteer participant… I decided my knowledge, experience and skillset, as a cancer patient, a cancer widow and cancer patient’s daughter, may be of benefit within this part of our health community.

Therese Townsend

QLD

Consumer Advisory Group (CAG) Member

When the CAG was launched it seemed like a perfect fit for me – a way to become actively committed to NECA.

Sharon Rickard

VIC

Consumer Advisory Group (CAG) Member

My son was 3 years old at the time of my diagnosis, when I heard the word cancer. And my thought was ‘he’s only 3, I’m not finished, I’m his mum, this is my job, so I’m not going anywhere.’

Amanda Stork

QLD

Consumer Advisory Group (CAG) Member

I am a returning CAG member. I’ve really enjoyed my time with the CAG and NeuroEndocrine Cancer Australia (formerly the Unicorn Foundation) and feel I still have more to give, so I was excited to continue volunteering for another term!

Jacqueline Gillespie

NSW

Consumer Advisory Group (CAG) Member

My name is Jacqueline Gillespie, and I live in Annandale in Sydney with my partner Meg and two miniature schnauzers. We also have a house in Blackheath which is our sanctuary and has become my place of healing and recovery. I was diagnosed with NETS on my 55th birthday in 2016. Like many other patients I had a range of symptoms over about 7 years that escalated over time. These included gut issues, shortness of breath, fatigue, anxiety and heart palpations. Up until my diagnosis these symptoms were treated as separate and distinct issues rather than indicators of a broader…

Walk, run, or ride this March4NETs!

For its third year, March4NETs will run throughout March 2026.

Get involved and support the 31,000 Australians living with neuroendocrine cancer.