What is neuroendocrine cancer?

Neuroendocrine tumours, or “NETs,” are cancers that can develop anywhere endocrine cells are present. These cells are found throughout the body, but the most common places for NETs to develop are in the gastrointestinal tract, lungs, and pancreas.  Tumours may also originate in other parts of the body such as the thyroid, thymus, adrenals, paraganglia, ovaries and testes.  Some neuroendocrine tumours produce excess hormones which cause symptoms such as diarrhea, flushing and nausea. Others don’t release hormones or don’t release enough to cause symptoms.

Once considered rare, NETs are typically slow-growing, but are now the fastest-growing class of cancers worldwide, accounting for approximately 2% of all cancers.  Neuroendocrine cancer can be difficult to diagnose because symptoms often mimic other conditions, so NETs are often misdiagnosed as something else.  It is common for patients to make many visits to the doctor over several years before an actual diagnosis is made; sometimes it takes up to 10 years from first symptoms to diagnosis.

Neuroendocrine cancer has a very low profile, partially because of its relatively low rate of incidence, but also because the media tends to mistakenly refer to the site of origin rather than neuroendocrine cancer, on the rare occasion when the topic arises.  Steve Jobs and Aretha Franklin, for example, are usually both said to have died from pancreatic cancer, when it was actually neuroendocrine cancer originating in the pancreas.

What is CNETS?

CNETS was established in 2007 and is the central body supporting the neuroendocrine patient community in Canada.  It is a charitable organization that funds research, supports clinical trials, and improves the quality of life and survival for neuroendocrine cancer patients by educating them about treatment options, providing support, and raising awareness of the disease.  This is so important for an illness where there is not a single standardized treatment path or cure and the medical community is mostly unaware or undereducated, with a relatively small number of experts.

CNETS runs an annual NET Research Grant Competition.  Before the first KBH in 2018, CNETS was able to fund two $40,000 annual research grants through its own fundraising, but we were collectively able to have a significant impact by funding an additional grant each year.

What is the Daniels KBH Triathlon?

The KBH Triathlon format is 8 km kayaking, 40 km biking, and 8 km hiking, all in the Blue Mountains/Beaver Valley Region of Ontario.  It is not a competitive format, but a fun, athletically demanding yet social event with a short scenic lunch break.  The event kicks off at 8:30 am and generally takes the whole day.  The 7^th Annual Daniels KBH will be taking place on Saturday, August 10^th, 2024.

In previous years, we raised $27,400 in 2018 (topped up by CNETS to fund a full grant), $42,400 in 2019, $43,842 in 2020, $49,135 in 2021, $50,029 in 2022, and 58,071 in 2023.

For 2024, we aim to raise a minimum of $50,000!  The minimal expenses associated with the triathlon are covered by the founders so all money raised (other than the Canada Helps admin and credit card fee) goes purely towards research.

So far, the money raised has gone towards the following:

The 2018 Daniels Constellation Grant for Neuroendocrine Cancer was awarded to Dr. Sten Myrehaug, whose study is looking at whether priming NETs using radiation may produce improved immunotherapy results in NETs patients.

The 2019 Daniels Constellation Grant for Neuroendocrine Cancer was awarded to Dr. Simron Singh and Dr. Ur Metser for their study that is examining whether combining two different types of patient imaging produces more prolific results that will help doctors to individualize treatment strategy for neuroendocrine cancer patients.

The 2020 Daniels Constellation Grant for Neuroendocrine Cancer was awarded to Dr. Jonathan Abele for his study evaluating metastatic NETs with three different PET radiotracers (68Ga- DOTATATE, 18F-DOPA, and 18F-FDG) to determine which imaging technique best identifies lesions that may respond to PRRT molecular therapy.

The 2021 Daniels Constellation Grant for Neuroendocrine Cancer was awarded to Dr. Iacovos Michael. His study is constructing a comprehensive tissue microarray from gastroenteropancreatic NET patients’ archival tissue and analyzing two specific molecular subtypes, MLP and YAP-OFF, to learn if they can aid in the stratification and prognostication of patients, guide patient-specific treatments, and ultimately improve quality of life and overall survival.

The 2022 Daniels Constellation Grant for Neuroendocrine Cancer was awarded to Dr. Lucy Ma. Her study will investigate the use of plasma whole genome sequencing to detect molecular residual disease (MRD) in patients with resected GEP-NET and evaluate the underlying biologic mechanisms that lead to recurrence.

The 2023 Daniels Constellation Grant for Neuroendocrine Cancer was awarded to Dr. Lina Chen, whose study will examine the tumour microenvironment (TME) of 600 archival GEP-NENs and use single-cell RNA sequencing to study how genes are active in individual cells. This project will identify new prognostic and predictive biomarkers that could improve management strategies for patients with GEP-NENs.