CONNECTING THE CANADIAN NET COMMUNITY |
|
- CNETS Board of Directors Message
- CNETS Fundraising Events
- HOOFING IT Around The Globe!
- 2021 Virtual NET Patient Conference
- 2020 NET Research Grant Recipients
- 2021 NET Research Grant Competition
- Scientific & Medical Advisory Board
- PRRT Access In Canada
- Maureen Coleman Award Nominations
- World NET Cancer Day
- Pewter Zebra Keyfobs/Pendants
- CNETS on Social Media
- Online Private NET Support Groups
- Virtual Support Group Meetings
- NET Surveys
|
|
|
|
CNETS BOARD OF DIRECTORS MESSAGE |
|
We sincerely hope that everyone is keeping well, staying safe, and has had the opportunity to enjoy the summer months.
The last 16 months have been challenging for many of us. CNETS rapidly adapted to the changing environment and continued to stay focused on our priorities to provide support, education, advocacy, awareness, and research for the neuroendocrine cancer community throughout the unprecedented pandemic situation.
Although all in-person events were impacted, CNETS implemented alternative means to continue to deliver the important support and education programs. We continued to provide telephone and email support. Our virtual private online patient and caregiver support groups became very popular sources for support and information. Many of our in-person patient support groups also continued to meet virtually through Zoom.
We also took a different approach to education this year and held our first virtual national NET patient conference. We were hoping that the community would embrace and enjoy the new format and based on the tremendously positive feedback, it was a huge success! When we asked for feedback on the virtual experience, 100% of participants said they preferred a virtual or hybrid model for NET education.
Another key priority of CNETS is to ensure ongoing funding of Canadian neuroendocrine cancer research. Fundraising events in support of our NET research grant competition have been significantly impacted by the pandemic. Last year we launched our HOOFING IT fundraiser and the community really came together and embraced it raising $80,000 for NET cancer research in Canada.
On July 1st, 2021 we launched our second HOOFING IT and we really need your help in order to raise enough funds to provide two NET research grants. 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.
Over the past very difficult 16 months, we have also witnessed incredible resilience, passion, commitment, and engagement within our community as we focused 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
As more of the community gets vaccinated, the situation with COVID-19 will hopefully be behind us. 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.
Stay well, stay safe and enjoy these final weeks of sunshine and warm weather.
|
|
CNETS FUNDRAISING EVENTS UPDATE |
|
CNETS is extremely grateful to the NET community, which has always shown a strong commitment and passion in supporting our fundraising efforts, to raise funds in order to provide grants for Neuroendocrine cancer research in Canada!
The research funding priorities are determined yearly through consultation with the NET patient community, and input from CNETS Canada’s Scientific and Medical Advisory Board.
Since 2015, CNETS fundraising efforts focused the Scotiabank Marathon events in Vancouver, Ottawa and Toronto. On average these events raised over $60,000 and CNETS has been able to provide 14 NET cancer research grants over this time period.
|
|
Last year, like most small organizations, fundraising efforts were stalled, due to the worldwide pandemic. CNETS launched our first summer-long fundraiser - HOOFING IT! and together, we raised an incredible $80,000 for NET research in Canada.
With the tremendous success of HOOFING IT Across Canada, this year we are HOOFING IT AROUND THE GLOBE, in an effort to travel 45,000 kms and raise $100,000 towards NET cancer research!
So far this year, we've raised approximately $25,000, for NET cancer research and accumulated 6,700 kms.
We extend a huge thanks to all of our participants Hoofing It around the globe and raising critical funds for NET cancer research. Please support us in reaching our $100,000 goal.
|
|
HOOFING IT
AROUND THE GLOBE
FOR NEUROENDOCRINE CANCER RESEARCH
|
|
FUNDRAISING FOR
NET CANCER RESEARCH
|
With only four weeks to go
WE NEED
YOUR HELP
to reach our $100,000 goal
|
|
|
Between July 1st - Sept 15th, 2021, the Canadian neuroendocrine cancer community will work together in an effort to raise $100,000 in the 2021 Neuroendocrine cancer research fundraising campaign, HOOFING IT AROUND THE GLOBE 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 kilometers as they can in a multitude of activities such as walking, kayaking, swimming, cycling, rollerblading, or even walking a pet!
Each participant will be able to track their activities, through MY VIRTUAL MISSION website or phone app. The combined activities will be mapped as kms and our mighty Team Zebra will be HOOFING IT AROUND THE GLOBE!
100% of funds received by CNETS will be directed to neuroendocrine cancer research.
Please consider joining HOOFING IT today and help us raise much-needed funds for Neuroendocrine cancer research in Canada.
|
|
2021 VIRTUAL NET PATIENT CONFERENCE |
|
As the COVID-19 situation continued to evolve, CNETS decided to hold this year’s NET patient conference virtually.
The 2021 VIRTUAL NET PATIENT CONFERENCE featured presentations from leading NET experts across the country, who shared the latest information in the diagnosis and treatment of neuroendocrine cancer.
In case you missed the conference, the recordings are now available for viewing on CNETS website.
|
|
CNETS Virtual NET Patient Conference Evaluation Results
When asked did you learn any new information: 91% agreed they learned valuable information
When asked did you like the virtual format: 87% rated the virtual platform as excellent or very good
When asked do you prefer virtual or in-person format: 25% would prefer virtual and 75% would prefer a hybrid of virtual and in-person
|
|
2020 NET RESEARCH GRANT RECIPIENTS |
|
CNETS is committed to improving the quality of life and survival for Neuroendocrine (NET) cancer patients across Canada and in support of this vision introduced a new Research Funding Framework in 2016.
CNETS is delighted to announce the 2020 Neuroendocrine Tumour (NET) Research Grant Recipients.
|
|
2021 NET RESEARCH GRANT COMPETITION |
|
CNETS will be launching the 2021 NET Research Grant competition in the coming weeks.
Important Dates:
Call for Applications: September 20, 2021
Application Deadline: November 22, 2021
Anticipated Notification of Decisions: December 20, 2021
For more information on CNETS NET Research Grant Competition, please email: info@cnets.ca
|
|
SCIENTIFIC & MEDICAL ADVISORY BOARD |
|
The purpose of the Scientific & Medical Advisory Board (SMAB) is to provide strategic advice to the Board of Directors of the Canadian Neuroendocrine Tumour Society (CNETS) regarding scientific and medical matters relevant to CNETS mission. The SMABs focus is on broad medical and scientific policy and program matters and not the detailed management and operations of CNETS.
In 2021 CNETS announced a new structure for the SMAB that includes a Chair, Past-Chair, Chair-Elect, and four Vice-Chairs.
CNETS is thrilled to have such experienced and committed medical professionals, lending their talents to the CNETS mission through their participation in our advisory board.
|
|
For the past several years, CNETS has continued to advocate for access to PRRT for NET cancer patients across Canada.
CNETS is pleased to announce that PRRT is now funded for NET cancer patients across Canada including: British Columbia, Alberta, Saskachewan, Ontario, Quebec, and Nova Scotia.
CNETS will continue to provide updates on LUTATHERA® funding in other provinces and information on PRRT on our website.
|
|
2021 MAUREEN COLEMAN AWARD |
|
The Maureen Coleman Award recognizes an individual for their outstanding contribution to the neuroendocrine cancer patient community. The late Maureen Coleman was the Founder and Past-President of CNETS who passed away in 2013 from neuroendocrine cancer. Maureen was a remarkable woman with great vision, passion, and compassion and she made a significant contribution to the neuroendocrine cancer community worldwide. In her honour, CNETS established the Maureen Coleman award to recognize the exemplary dedication to this community.
2021 Maureen Coleman Award Nominations – Please submit the completed nomination submission as outlined on CNETS website, in confidence to: support@cnets.ca by October 30, 2021. |
|
World NET Cancer Day is an annual event held on the 10th 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 Wednesday, November 10th, 2021 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
|
|
PEWTER ZEBRA KEYFOBS/PENDANTS |
|
Volunteers create handmade one-of-a-kind pewter Zebra Keyfobs/Pendants
to help raise awareness and funds for CNETS
|
One of Al Gillis hobbies is pewter casting and he thought it might be interesting to do something using CNETS logo.
Al approached CNETS with the idea and we were thrilled about Al’s grassroots approach to raising funds and awareness of NET cancer.
|
|
Al has started working on the second batch of these beautiful handmade creations. |
|
CNETS continues to find ways of connecting with the NET cancer patient community across Canada.
CNETS social media presence allows us to share current information on NET cancer including support, education, advocacy, research, and awareness.
Stay connected to CNETS through our social media channels including our newest channel - Instagram
Click on the social media icons below to follow, like, or join.
|
|
ONLINE PRIVATE NET SUPPORT GROUPS |
|
COVID-19 has 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 950 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.
|
|
VIRTUAL SUPPORT GROUP MEETINGS |
|
Those who attend our support group meetings enjoy face-to-face interaction. With this in mind, some of our support groups have decided to meet virtually by zoom. The zoom meetings offer 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.
|
|
Thank you to those who participated in some recent NET surveys.
If you would like to participate in a survey, the following are still open:
NET CONNECT SURVEY - International survey on the management of patients living with NET during COVID-19 pandemic: patient and physician perspectives
NET NURSES & DIETICIANS SURVEY - assess the need for a dedicated collaboration of Nurses and Dieticians in Canada who provide care to people affected by neuroendocrine cancer
PRESTO2 SURVEY - Understanding the injection experience of patients with injectable treatments for Neuroendocrine Tumors (NETs)
|
|
|
|
|
|
|
