A core function of CNETS is to offer the Canadian neuroendocrine cancer community useful, impactful and informative educational resources to help them navigate their own health journey.  AMANDA RICE, CNETS board member, Vice President and prior Treasurer, is a devoted volunteer whose husband, Greg Poole, passed away from neuroendocrine cancer in 2014.  While navigating care for her husband, Amanda found the patient conferences, education sessions and support meetings tremendously helpful in learning about treatments and getting to know others with the same cancer. For this reason, Amanda has been giving back to the community since 2014 and has organized the last three national patient educational conferences for CNETS.

Amanda also holds an annual golf tournament, the Greg Poole Banana Ball Classic, to raise funds for CNETS in memory of Greg and has raised more than $30,000 to date, directed towards neuroendocrine cancer research, and is a frequent participant in the Scotiabank Toronto Waterfront Marathon Charity Challenge.

One of CNETS long-term objectives is to develop a greater collaboration with nurses and dietitians in Canada involved in neuroendocrine cancer patient care.  ZOE IGNACIO, RN, BN, CON(C), CNETS board member and Secretary, is spearheading this collaboration on behalf of CNETS, which will kick off with a virtual summit on November 27^th, 2021.  Zoe is a registered nurse in oncology with over 15 years of oncological nursing experiences, in an in-patient and out-patient setting, to various types of cancer, including Neuroendocrine Cancers, and cancer treatment modalities. She is currently practicing as a research nurse in oncology and hematology in Manitoba.  Although managing a hectic nursing career, Zoe generously shares the valuable professional nursing perspective of the NET patient journey to all of our activities and her engagement in our nursing and dietitian collaboration will broaden our ability to have a direct impact on the needs of this community and their support of neuroendocrine cancer patients.

Support for patients and caregivers is the raison d’etre for CNETS.  Few things bring as much fear as being told you have cancer.  We strive to find ways to reach patients and caregivers with current information and data to help the patient/caregiver manage the disease.   Peter Fransham, PhD, joined the Ottawa Support group in search of people to help him manage his NETs life. He is a 5 year survivor with no relapse. Unlike many NET patients his cancer was detected early and successful surgery has stabilized the disease.  In 2019 he became the CNETS Ottawa Support Group leader and will be the first to expound on how rewarding that experience is.   He joined the CNETS Board of Directors in 2021 and has taken on the role of modeling NETs incidence and prevalence in Canada.  This work has brought him into contact with NETs researchers who need reliable incidence and prevalence data when applying for research grants.  A paper on his collaborative work is in progress and will published with authorship including academia and CNETS directors.   In the same sphere he is working on conceptualizing how to track patients’ quality of life and their NETs journey.  This is a complex problem focusing on the patient but with input from multiple stakeholders.  His “day job” is designing waste to energy processes and equipment.  He claims to be retired but works most days on design improvements and new ideas.