CONNECTING THE CANADIAN NET COMMUNITY
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- Board of Directors Message
- Virtual Education Survey Results
- 2020 Fundraising Events
- HOOFING IT!
- 2019 NET Research Grant Recipients
- Upcoming NET Webinars
- COVID-19 Webinars
- CNETS Name Change
- World NET Cancer Day
- Online Private NET Support Groups
- Virtual Support Group Meetings
- CNETS Resources
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BOARD OF DIRECTORS MESSAGE
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We sincerely hope that everyone is keeping well and staying safe during this very difficult time. On behalf of the entire CNETS team please know that our thoughts are with you and your families and friends as we all continue to face this unprecedented pandemic situation. We at CNETS are coping with these difficult times by staying focused and on track with our support of the neuroendocrine cancer community. CNETS continues to provide telephone and email support, education sessions and peer-led support programs to the community, however, given the limitations on in person gatherings our ability to offer in person support group meetings and in person patient education sessions has been impacted. We have implemented alternative means to deliver these important support and education programs, which you will read more about in this newsletter.
Another key priority of CNETS is to ensure ongoing funding of Canadian neuroendocrine cancer research. Fundraising events in support of our 2020 research grant competition have been significantly impacted by the pandemic and as a result we are taking a different approach this year that we hope many in our community will embrace and enjoy! We recognize that times are very tough for many and appreciate that not everyone will be able to engage, fundraise or donate but given neuroendocrine cancer research projects funded by CNETS have a direct impact on patients today and in the future, we are committed to working hard to deliver on our grants. We know that with the support of our community Canada wide we will persevere and be successful in maintaining this critically important program.
In these last few months we have witnessed incredible passion, commitment and engagement within our community as we focus on new and innovative ways to work together and achieve our goals. We at CNETS know how fortunate we are to have such an incredibly engaged community and for this we are immensely grateful. In return please know that we continue to be available virtually to assist you. You can reach us live at 1-844-628-6788 and via email at
support@cnets.ca
We have many other exciting activities going on behind the scenes including a strategic review of neuroendocrine cancer awareness in Canada, critical treatment and diagnostic advocacy, and engagement with our neuroendocrine medical and scientific community on various different fronts. We will share more information on these initiatives as they evolve.
Although we are eager to re-engage in person with all of you, your safety and well-being, and also our staff and volunteers, is of the utmost importance to us. You can trust that as we work through planning of future events and initiatives across Canada, our decisions will be based on expert and trusted guidance and pandemic updates from the World Health Organization (WHO) and the Public Health Agency of Canada (PHAC).
Stay well, stay safe and enjoy these few months of sunshine and warm weather
.
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VIRTUAL EDUCATION SURVEY RESULTS
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With respect to educational needs, the NET community was asked about their interest in virtual live patient education webinars. The virtual NET education survey collected feedback and provided guidance on what topics are of most interest to the community and on virtual meeting participation.
110
NET community members completed the virtual NET education survey.
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When asked what are you most interested in learning about?
Disease Information
- 75% Treatment Options
Diagnosis
- 90% Imaging (all types of scans)
Treatment options
- 57% PRRT, 47% Surgery, 42% Systemic therapies
Support / Disease Management
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61% Symptom Management, 52% Diet
Research
- 84% CNETS sponsored research updates
Clinical Trials
- 93% Current Canadian NET clinical trials
When asked about Virtual Education?
80% Would attend an online/virtual live education webinar.
42% Maximum time up to 2 hours for a virtual webinar.
Based on the feedback we received, CNETS will start to host NET education webinars on the topics of most interest to the community.
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CNETS 2020 FUNDRAISING EVENTS
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Despite these extremely challenging times, as the only Canadian NET patient organization supporting NET cancer research, we believe continuing to fund research is critical to our community and therefore we are obligated and committed to maintaining our funding program. However, we fully recognize that things are going to be very different this year.
Our main fundraising venues such as the Scotiabank Marathon events across Canada have either gone virtual or been canceled. Our commitment is more important than ever this year given the tremendous focus of research and support towards COVID-19. While the redirection of resources is completely understandable and critically important, cancer patients continue to depend on organizations such as ours to be there to support them as they face even more challenges than ever in this current environment. That includes support of research.
CNETS convened a working group of our top fundraisers to assist us in working through best next steps as it relates to fundraising in this new environment.
Special thanks to the CNETS NET Cancer Research Fundraising Working Group members for their time, passion, and wonderful ideas: Bailey Daniels, Lyn Gaetz, Donna Hillier, Lynne Little, Vanessa Mann, Natalie Mezey, Sharon Needham, Amanda Rice, Tracey Sherwood & Ken Young.
We are thrilled to announce our newest fundraiser and we hope we can count on you to be there for our cause!
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HOOFING IT
ACROSS CANADA
FOR NEUROENDOCRINE CANCER RESEARCH
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Between
July 1
st
and
September 7
th
, the Canadian neuroendocrine cancer community will work together in an effort to raise $100,000 in the 2020 Neuroendocrine cancer research fundraising campaign,
HOOFING IT
Across Canada for Neuroendocrine Cancer Research!
In this easy and fun event, participants will choose their own fundraising activity that can be done alone, or they can create a fundraising team, and their activity will take place in their own community. Participants will rack up as many kilometres as they can in activities they like, such as walking, kayaking, swimming, cycling, roller-blading, or more. Each participant will track their individual distances. Together, we aim to rack up 5,514 km to get us from Newfoundland & Labrador to the Yukon!
We encourage all participants to practice appropriate social distancing etiquette during their activities.
Please share pictures of your activities at
#HOOFINGIT
100% of funds received by CNETS will be directed to neuroendocrine cancer research.
Join
HOOFING IT
today and help us raise much-needed funds for NET cancer research in Canada!
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WAYS TO PARTICIPATE IN HOOFING IT!
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Join as an Individual Fundraiser
Join as a Fundraising Team
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For anyone who cannot join
HOOFING IT
, but would like to donate
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2019 NET RESEARCH GRANT RECIPIENTS
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CNETS is incredibly grateful to the NET community, who continue to raise funds for NET cancer research in Canada. The commitment of our community is heart warming and you are making a REAL difference in the lives and futures of NET cancer patients.
The 2019 NET Research Grant will provide grant-in-aid for THREE projects up to a maximum of $40,000 per project.
The third NET Research Grant was made possible thanks to the tremendous fundraising efforts of Bailey and Jonathan Daniels. In their honour, this NET research grant is named: The Daniels Constellation Grant for Neuroendocrine Cancer Research.
CNETS received six grant requests for the 2019 competition, all of which were assessed by a review panel made up of medical professionals with expertise in NETs as well as two NET cancer patient representatives. The review panel made a recommendation on the their top three projects, which were accepted by the CNETS Board of Directors.
CNETS is delighted to announce the 2019 Neuroendocrine Tumour (NET) Research Grant Recipients.
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UPCOMING NET EDUCATION WEBINARS
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Role of Dietary Supports in NETs
Wednesday July 8
th
, 2020
4:00 pm 5:00 pm EST
Moderator: Dr. Julie Hallet
Speaker: Anna Van Osch
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Neuroendocrine Tumours 101
Wednesday July 15
th
, 2020
4:00 pm - 5:00 pm EST
Moderator: Lyn Gaetz
Speaker: Dr. Daniel Rayson
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COVID-19 & NET PATIENT CARE WEBINARS
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CNETS hosted three COVID-19 and NET patient care webinars. For anyone who missed these informative sessions, the recordings are now available to view on our website.
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It's official, the Carcinoid-Neuroendocrine Tumour Society of Canada (CNETS Canada) has been renamed and rebranded to the Canadian Neuroendocrine Tumour Society (CNETS).
What Changed?
We removed the word “Carcinoid” from our name and replaced it with “Canadian”. It’s a small change, but it means a lot! Today, there is a shift away from describing these tumours as “carcinoid”, meaning slow-growing and “cancer-like“, to the term neuroendocrine tumours (NETs). It is now recognized that “carcinoid” inadequately describes the characteristics of many NETs.
Our organization has been the only Canadian patient driven organization for nueroendocrine cancer patients, their families and their support team since 2007. We believe that introducing “Canadian” in our name, will help us raise awareness of neuroendocine tumours amongst the Canadian general public, the medical community and our funders.
Fortunately, the acronym remained the same, CNETS!
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World NET Cancer Day is an annual event held on the 10
th
of November, which aims to increase awareness of Neuroendocrine (NET) cancers and to provide a voice to the NET community for improved diagnostics, treatments, information, care and research.
On Tuesday November 10
th
, 2020 landmarks across Canada will once again light up black and white in recognition of World NET Cancer Day.
In the weeks leading up to World NET Cancer Day, we will share all the landmarks that will be participating. If you can help us in this NET awareness effort, please email:
info@cnets.ca
#LETSTALKABOUTNETS
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ONLINE PRIVATE NET SUPPORT GROUPS
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The Coronavirus (COVID-19) crisis continues to be a worrisome and an uncertain fact of life. We have to make constant adjustments to our daily routines and how we interact with others.
COVID-19 has also changed what information people need and how they want to receive it. Our in person education and support groups have all been moved to a virtual environment.
CNETS has three private, online support groups to help connect and support NET patients and caregivers from across Canada.
With a combined membership of over
800
members, these groups are a place to share personal experiences, doctor recommendations, treatments, clinical trials and information to aid in navigating the Canadian healthcare system. Kindness, support and love to all.
In order to join one of our groups, you need to confirm that you are a NET cancer patient, or a caregiver of a NET cancer patient.
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VIRTUAL SUPPORT GROUP MEETINGS
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Given
the limitations on in person gatherings, our ability to offer in person support group meetings has been impacted. All in person support group meetings have been cancelled until further notice.
For those who attend our support group meetings, they enjoy the face-to-face interaction. With this in mind, some of our support groups have decided to meet virtually by zoom. The zoom meetings offer the face-to-face interaction, while maintaining social distance.
If you would like to attend a zoom virtual support group meeting, please email the support group leader below, for the date, time and a link to the next virtual meeting.
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