June Newsletter

We are full swing into Spring 2016 and we have been extremely busy over the last several weeks/months. We are particularly excited about the CNETS Canada sponsored Canadian research competition and were absolutely delighted with the response we received from the Canadian NET medical community. You’ll read more about the details in this newsletter but we can’t wait to announce the successful proposals as soon as our review committee has concluded the review process. In order to fund these amazing research projects we have to raise money and I am very proud, once again, of our Ottawa NET community and the tremendous effort Team Zebra Ottawa put into the recent Marathon event. They have once again come through for us and I personally extend a huge thanks to everyone who participated and fundraised. We are in awe of the dedication of this community and so grateful for everything that you have done for us over the years. In a few weeks our Team Zebra Vancouver will hit the pavement as well in the Vancouver event. If you haven’t already please join the team if you can and help raise precious funds for NET cancer research! If you can’t be there please donate, which you can do via our website. GO TEAM ZEBRA!!

Another very important initiative that we have been working on is the patient submission to CADTH for the use of Afinitor in Lung and GI NET patients. It is so important that we do whatever we can to ensure that all NET patients have access to the best treatment options and participating in this process is one of the critical ways in which we do this. A huge thanks to all of the patients who participated, and to Sue Folinsbee and Enrico Mandarino for compiling and submitting the patient information to CADTH.

Finally, I am delighted with the knowledge that neuroendocrine cancer patient access to PRRT has increased and will be widening further in the months ahead. Clinical trials are now available in Quebec and Alberta. In Ontario, they will available at various sites, in addition to the one in London (Ontario) that is already in place. Also, we hope to see a trial up and running in BC in the near future. The upcoming PRRT Consortium trial in Ontario, with PMH as the first site rolling out under the new protocol has been a long time coming and CNETS Canada has fought long and hard to see this trial come to fruition. Please visit NET Clinical Trials in Canada to see a listing of these trials. I could not be more delighted to know that it will soon be underway. There have been many who have advocated for this trial over the years, from the patient side and the clinical side and the inclusion of the Ga68 diagnostic scan in the Consortium trial is a particularly huge win for our community. Congratulations and thank you to everyone who has contributed to access to the diagnostics and treatment in the form of these trials across Canada!

Until next time.

Jackie

CNETS CANADA LAUNCHES A NEW WEBSITE

Over the last several years CNETS Canada has worked hard to continuously improve our website and the information contained in it to ensure that it is highly functional and as useful as possible to our patient community. We recognize that access to online information is a vital tool for our patient community, an observation that was recently confirmed by our patient and caregiver survey in which a large percentage of respondents indicated that they expect CNETS Canada to provide support and education through their website.

We are delighted to announce the launch of our significantly improved website with many new fantastic features. We wanted to make the new website faster, easier to navigate, and more user-friendly.

NEW WEBSITE FEATURES

The site’s homepage opens to an interactive pictures carousel with quick links to Patient Education, NET Resources, Calendar of Events and NET Awareness. The footer contains widgets to CNETS Canada’s Facebook and Twitter pages, upcoming events and contact information.

The main menu is divided into 5 sections:

Support Us – Includes ways you can help and support CNETS Canada by donating, volunteering or shopping for Zebra merchandise.

About Us – Includes CNETS Canada’s Objectives, Vision, Mission, Core Values, Annual Reports and the Board of Directors. There is also a special tribute to CNETS Canada’s founder, Maureen Coleman.

News and Events – Includes the latest news and a Calendar of Events with event details, links to register or RSVP, locations and maps. The interactive calendar allows you to download events to personal calendars. The section also features CNETS Canada’s Fundraising Events, Newsletters and NET Awareness materials.

Research – Includes information on our Scientific and Medical Advisory Board, CNETS Canada’s NET Research Funding Framework, and NET Research Grant Recipients.

Patients and Caregivers – One of CNETS Canada’s primary objectives is to provide Support and Education. We have added many new features to this section and it is now divided into 4 areas – Support, Resources, NET Diagnosis and Treatments and Patient Education.

Support – There are several ways CNETS Canada offers support to NET patients and caregivers by contacting us for live support, connecting with Support Contacts, attending Support Group Meetings in various locations across Canada and by joining the private Canadian NET Community Facebook Support Group.

Resources – The resources section is packed with information for NET patients and caregivers including our very popular NET Reference Guide, a one page NET cancer facts sheet, the Canadian and International published NET guidelines for the diagnosis and management of NET, and Nutrition and NET resources.

NET Diagnosis and Treatments – This section is new and we will continue to add resources including NET symptoms, staging, grading and prognosis.

NET Diagnosis: blood tests, scans, scopes, urine and other tests that are used to properly diagnosis NET.

NET Sites: locations throughout the body where a NET can be found.

NET Treatments: all available treatment options to manage NET and clinical evidence. NET medications include indication(s), dosing, funding across Canada and clinical evidence. The section also includes new NET treatments and a listing of NET clinical trials in Canada.

Patient Education – This section includes upcoming NET Education Days in various locations throughout Canada, archived NET educational presentations and videos by NET Health Care Professionals and information on the next National NET Conference.

The best way to experience the new website and all of the resources is to navigate through the site. We will continue to add new sections, resources and update information to ensure the website is a valuable resource for the Canadian NET community.

CNETS Canada is also committed to providing a French version of the website. We are translating all the sections and will be launching the French site in the coming weeks.

Your feedback is on the new website is very important and we look forward to hearing any feedback from you. If you experience any problems using the new website or if you have any questions, please contact us at info@cnetscanada.org.

2016 NET RESEARCH GRANT – UPDATE

The deadline for submitting applications for the 2016 NET Research Grants was April 15, 2016.

To be eligible for a grant, the project must involve a clinical trial or a clinical or fundamental research project (including animal or cellular models) to examine issues relevant for 68Gallium PET Diagnosis and 177Lutetium Peptide Receptor-based Radionuclide Therapy (PRRT) for the Neuroendocrine tumors.

The Review Committee with members of the Scientific and Medical Advisory Board (SMAB) and external NET experts are evaluating the proposals and will make their recommendations for the 2016 NET Research Grants to the CNETS Canada Board of Directors.

The NET patient and support community has continually demonstrated a strong commitment to supporting CNETS Canada’s fundraising efforts. CNETS Canada is committed to improving the quality of life and survival for NET patients across Canada, and is confident that our new research funding framework will enable us to deliver on this vision.

The CNETS Canada Board of Directors will announce the 2016 NET Research Grant recipients in the coming weeks with funding availability to start July 1, 2016.

2016 FUNDRAISING EVENTS – UPDATE

Tamarack Ottawa Race Weekend – May 28-29, 2016

A huge thank you and congratulations to the amazing TEAM ZEBRA OTTAWA – 3rd TOP TEAM at the Tamarack Ottawa Race Weekend, raising over $14,000 for neuroendocrine cancer (NET) research!

Team Zebra Ottawa members Sue Folinsbee and Hunter Fox (Team Co-Captain) were also in the TOP TEN FUNDRAISERS!

Scotiabank Vancouver Half-Marathon & 5K Run/Walk – June 26, 2016.

CNETS Canada’s second fundraiser is quickly approaching and TEAM ZEBRA VANCOUVER members are training for the marathon while raising funds for NET cancer research. Please show your support by donating to TEAM ZEBRA VANCOUVER.

Scotiabank Toronto Waterfront Marathon – October 16, 2016.

Join our ever-growing TEAM ZEBRA TORONTO and Run or Walk with NET Zebras to help us raise funds for NET cancer research!

Fundraising events are critical for CNETS Canada to be able to support research initiatives specific to neuroendocrine cancer. CNETS Canada is the only Canadian charitable, patient-driven organization funding NET specific research in Canada and we can’t do it without your help!

TEAM ZEBRA OTTAWA

TEAM ZEBRA VANCOUVER

TEAM ZEBRA TORONTO

JOIN THE CANADIAN CARCINOID NEUROENDOCRINE ZEBRAS CNETS COMMUNITY SUPPORT GROUP

This is a Canadian based private Facebook Support Group for those afflicted with Neuroendocrine Cancer and their caregivers. 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.

JOIN CANADIAN CARCINOID NEUROENDOCRINE ZEBRA

JOIN THE NEW CANADIAN CARCINOID NEUROENDOCRINE CAREGIVERS SUPPORT GROUP

This is a Canadian based private Facebook Support Group for family members and friends of those afflicted with Neuroendocrine Cancer. This is a place to get emotional support-to talk about feelings, trade advice or just listen. It is a place for sharing ideas for coping and knowing that you aren’t alone. Kindness, support and love to all.

JOIN CANADIAN CARCINOID NEUROENDOCRINE CAREGIVERS

CNETS CANADA STRATEGIC PLANNING SESSION

On Saturday April 2, 2016, CNETS Canada board members and staff held a day-long strategic planning session to set out a plan for 2016-2018. At the outset of the meeting, the importance of moving to be a more structured organization and being realistic about what CNETS Canada can achieve was acknowledged.

During the session, the group reviewed past goals from the 2012 strategic planning session and the organization’s mission, vision and values. Some minor changes were suggested to the mission and vision that clarify and better reflect the work of the organization. A review of the previous strategic plan showed that while CNETS Canada achieved most of its goals, some took longer than expected.

Highlights of what was achieved included 1) the patient handbook, 2) the hiring of a patient coordinator, 3) establishing more support groups, 4) the 2012 Ottawa conference, and a research process with a Scientific Advisory and Medical Board.

Moving forward from 2016- 2018 the strategic direction will focus on four major areas: awareness, education, support and research. Within these four areas, the organization will focus on activities that are high impact and for which it has high capacity. These activities include: a focus on the web site and social media, patient and support group leader handbooks, expanding support groups, offering education patient education days and a 2017 conference, and health policy. CNETS Canada will continue to solicit the views of the community through patient surveys. There will be a concentrated focus on fundraising and acknowledging our donors. A new newsletter specifically for donors will be developed in 2016.

PATIENT SUPPORT SURVEY RESULTS

CNETS Patient Community has its “Say”

In February 2016, CNETS Canada asked for feedback through an online, anonymous survey so it could understand the support needs of the Canadian neuroendocrine cancer patient community.

We received 117 responses from across Canada with 75% of the replies from patients. One of the most significant findings was the importance of the CNETS web site. The majority of those responding to the questionnaire found out about us through an online search. 93% of people see the website as the most important vehicle for providing them with education and information. Vital information for our patient community includes disease-related information, names of Canadian Net specialists, available treatments and scans, and clinical trials. CNETS Canada has recently launched a new web site which responds to user needs around easier navigation to find information.

MONTREAL STARTS NEW SUPPORT GROUP

Daniel Opoku, Angela Desimini, and Donna Hiller are a team when it comes to starting up and running CNETS Canada’s newest support group. “We are a three-headed monster,” says Daniel. Together, the three support group leaders have played to their strengths to get the first meeting off the ground and build the group for the future. Angela explains that they are all busy and have their own challenges. Working together makes it easier for everyone.

While all three saw the need for a support group, it took Sherry Fox, one of Ottawa’s support group leaders to connect them. Daniel, a PNETS patient, originally connected with Angela, a colleague at his workplace through the introduction of a mutual friend. Angela’s sister had had the same diagnosis as Daniel. Donna is also a caregiver. Sherry connected Donna with Daniel and Angela. The three had a conference call about starting the group and the rest is history. Their first support group meeting was held in April 2016 on a Wednesday evening. Meetings take place every two months. During alternate months, support group members have the option of attending meetings in Ottawa and visa versa for Ottawa members. The group is able to operate in English and French and will adapt to the needs of its members.

All three leaders agree that a support group is so important in terms of sharing information and experiences. Donna says, “We felt quite lost when my husband was diagnosed with NETs in 2008.” Daniel adds, “We can share stories and can talk about things we can’t talk about with others. It gives you hope.” As well as sharing experiences, Angela emphasizes the importance of sharing contacts and “having a forum to learn about different treatments to help with this disease.”

Angela DeSimini

Daniel Opoku

EXCITING NEUROENDOCRINE RESEARCH IN CANADA

Research conducted by several of Canada’s top neuroendocrine cancer experts was published in the June 2016 issue of Endocrine Pathology, The Official Journal of the Endocrine Pathology Society.

The paper titled “Establishment and Characterization of a Human Neuroendocrine Tumor Xenograft” outlines the successful development of a xenograft model of gastrointestinal NETs. A xenograft is one of the most widely used models developed to study human cancer. Such a model is used to investigate factors involved in malignant transformation, invasion and metastasis as well as examine a response to therapy. Human tumor cells are transplanted into mice, either under the skin or into the organ type in which the tumor originated. A NET xenograft provides the opportunity for researchers to study the biological behavior of NETs and examine the in vivo effects of various medical and targeted radiotherapeutic agents on the growth of NET tumours.

VANCOUVER EDUCATION DAY

CNETS Canada held an Education Day in Vancouver on May 7, 2016 at the Silvia Hotel. Dr. Hagen Kennecke was the guest speaker and presented on “What’s New For NETs – LOTS!

Dr. Kennecke started the day by introducing himself and described his background and interest in NETs. He then asked everyone to introduce themselves and share a bit about their story. This helped to set the stage for the day. Dr. Kennecke began his presentation with a basic overview of NETs, before describing more complicated concepts.

Everyone very much appreciated the casual and interactive format and the ability to ask lots of questions.

At the end of Dr. Kennecke’s presentation, attendees expressed a sense of hope around the new protocols towards which the BCCA is working. Other comments included words such as ‘inspirational,’ ‘informative’ and ‘educational!’ Thank you so much to Dr. Kennecke for sharing his time and expertise, and for being super approachable!Following the presentation we held a Vancouver Patient Support Group Meeting. Attendees expressed a sense of comfort from sharing stories, describing the pros/cons of their experiences and being able to interact with others affected by the disease.

A very special thank you to Sandra Magee, who offered to help organize the next Education Day and Support Group Meeting at a more central location within British Columbia. Sandra has also been instrumental in helping to form the new “Canadian Carcinoid Neuroendocrine Zebras” – A private Facebook CNETS Community Support Group, that in just a few months has over 120 members.

Dr. H. Kennecke

AFINITOR NOTICE OF COMPLIANCE FOR GI-LUNG NET

On May 27, 2016 Health Canada issued a Notice of Compliance, (NOC) for Afinitor in GI-Lung NET.

The official indication from the Product Monograph is:

“AFINITOR® is indicated for the treatment of unresectable, locally advanced or metastatic, well-differentiated, non-functional neuroendocrine tumours (NET) of gastrointestinal or lung origin in adults with progressive disease.”

CNETS Canada is registered as a patient advocacy organization with CADTH to provide patient advocacy group input into the pCODR processes.

Thank you to patients and caregivers who completed our online survey and volunteered to be interviewed. We gathered robust anonymous information in order to complete our patient group submission. We have submitted our input to CADTH according to the pCODR timelines.

NET cancer is often

misdiagnosed

as something else

support@cnetscanada.org

416-628-3189

Toll Free: 1-844-628-6788

THE GREAT CANADIAN GIVING CHALLENGE

CNETS Canada is participating in the Great Canadian Giving Challenge! For the entire month of June, every dollar you donate to CNETS Canada qualifies us to win $10,000. More details at www.givingchallenge.ca The more you give, the more chances for us to win!
	DONATE TO CNETS CANADA

CNETS Canada | support@cnetscanada.org | https://cnets.ca