[Hopespringpcsg] FW: CCSN October 2019 E-Letter

Wed Oct 2 14:50:26 EDT 2019

Hi all:

See below for the CCSN e-newsletter.

Thx.

Glen

From: Canadian Cancer Survivor Network [mailto:info at survivornet.ca] 
Sent: October 2, 2019 1:51 PM
To: glen46nor at gmail.com
Subject: CCSN October 2019 E-Letter

 <https://mailchi.mp/survivornet/ccsn-october-2019-e-letter-1000089?e=2e211ff547> View this email in your browser 

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/5ab93ca7-1fcf-4f86-9fbb-956a3c2bca39.jpg> 

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/69051572-3972-4745-9e01-8a1051da7102.png> Canadian Cancer Survivor Network
October Update

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=92da4a0ea8&e=2e211ff547> How to Have Your Voice Heard During the Oct. 21, 2019 Federal Election 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=d13c10800d&e=2e211ff547> 

With the federal election nearing this month, it is important for advocacy groups and health champions to feel confident about getting their messaging in front of policy and decision makers. As part of our ongoing series, CCSN will be hosting an educational webinar titled “How to Have Your Voice Heard During the Oct. 21, 2019 Federal Election” on October 3 to highlight tactics to engage with the newly elected or re-elected government.

Presented by Ryan Clarke of Advocacy Solutions, the webinar will cover topics such as:

*	Better appreciating the difference between federal and provincial roles in healthcare;
*	Using specific advocacy engagement tactics aimed at candidates, including developing your own key messages; and,
*	Understanding the importance of reaching out to the newly (re)elected MPs after Oct. 21.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=a308e788c9&e=2e211ff547> REGISTER NOW 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=409664647d&e=2e211ff547> Patient Group Engagement in Public Policy: the Convergence of Experience, Influence and Opportunity 

CCSN President & CEO Jackie Manthorne was one of several speakers at the Ontario Lung Association Breathing Policy Forum on Patient Engagement in Public Policy held in Toronto on Sept. 18, 2019.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c6e9624d19&e=2e211ff547> 

During this forum on patient group engagement within the drug submission process and national Pharmacare, Manthorne presented information about CCSN and the dozens of patient group submissions that CCSN has made to the pan-Canadian Oncology Drug Review (pCODR), the Canadian Agency for Drugs and Technologies in Health (CADTH), and the Institut national d’excellence en santé et services sociaux (INESSS). She added that she is particularly proud of one of the most recent submissions to pCODR, when CCSN spearheaded a submission on a new treatment for several cancers, including lung, colorectal, thyroid, sarcoma and childhood cancers, including neuroblastoma, which was the first submission to pCODR for a new treatment for several cancers.

For more information, contact Manthorne at  <mailto:jmanthorne at survivornet.ca> jmanthorne at survivornet.ca.

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=df0c305a4e&e=2e211ff547> Where Do Canada’s MP Candidates Stand on Cancer Issues? 

Ahead of the federal election, CCSN believes in the critical importance of raising key issues related to the mission of creating and maintaining the best standard of care for cancer patients, survivors and caregivers. As part of these efforts, CSSN has asked the parties and candidates for their stance on the following issues:

*	Employment Insurance Sickness Benefits
*	National Pharmacare Program
*	Youth Vaping
*	Breast Cancer Screening

CCSN posts official party and candidates’ responses on our website  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=bae93c3e12&e=2e211ff547> here. Please review your local candidate responses and share the page with friends, family and colleagues. 

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7114331383&e=2e211ff547> Are You a Breast Cancer Patient or Survivor Living in Ontario? If so, We Would Like to Hear From You! 

Were or are you an early stage breast cancer patient who has accessed a Gene Expression Profiling test in Ontario, such as Oncotype Dx or EndoPredict? If so, we would like to conduct a brief telephone interview with you.

CCSN is preparing a patient evidence submission on Gene Expression Profiling testing to Health Quality Ontario (HQO), which is currently conducting a health technology assessment for early invasive breast cancer. Your experience with a Gene Expression Profiling test will help to inform that submission and provide the expert committee at HQO with a valuable perspective as they prepare to issue their final funding recommendation for Gene Expression Profiling tests in Ontario.

If you have accessed a Gene Expression Profiling test, please contact Filomena at 416 809 2889 or  <mailto:fservidio.italiano at gmail.com> fservidio.italiano at gmail.com to schedule a quick telephone interview by no later than Thursday, October 10, 2019.  Sharing your lived experience may help to ensure access to Gene Expression Profiling tests for early stage breast cancer patients in Ontario.

Additionally, you can take a survey to help. Complete the survey by October 14, 2019:  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=97f7bb5394&e=2e211ff547> https://connect.impetusdigital.com/gep-ccsn

Please note: patient privacy and confidentiality will be maintained at all times.

CCSN PARTNER SPOTLIGHT:
Nanny Angel Network 

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/4b7fbaf8-93c6-45fa-bb97-19509e536439.png> 

Cancer is traumatic for everyone, but it can be especially hard on women with young kids. Without reliable, affordable childcare, many end up postponing appointments and compromising their treatment.

Ontario doesn’t offer in-home childcare to families facing cancer, and that means those who may have already lost income end up spending money they can’t afford – or aren’t able to access reliable childcare at all.

That’s where the  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c474d753b4&e=2e211ff547> Nanny Angel Network comes in. NAN is a registered charity: our Nanny Angels are not paid providers, but caring, trained, fully-insured volunteers who want to help others. For four hours a week, they volunteer their time so mothers can rest, go to appointments, or simply have a few hours for themselves. Moms know their kids are in safe, caring hands, which reduces stress and lets them focus on their own well-being.

The Nanny Angel Network provides free, professional relief childcare for GTA-area mothers with cancer. We care for children 16 and under and provide timely, compassionate support to families throughout treatment, recovery, palliative care and bereavement.

Find them on the CCSN Partner page:  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=d1fbf1f75a&e=2e211ff547> https://survivornet.ca/connect/partners/nanny-angel-network/

In This Issue:

*	 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=2b3676f3ec&e=2e211ff547> How to Have Your Voice Heard During the Oct. 21, 2019 Federal Election
*	 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=54351a19dc&e=2e211ff547> Where Do Canada’s MP Candidates Stand on Cancer Issues?
*	 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c052a6e8cc&e=2e211ff547> Welcome to CCSN’s New Communications & Social Media Manager
*	 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=cc387f5366&e=2e211ff547> An Update from Clinical Trials Ontario
*	Upcoming Webinars
*	Past Webinars

How Much Do you Know About Biosimilar Medications?

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The Gastrointestinal Society has released a short and anonymous survey asking for your opinion on Biosimilar Medications. Whether you know nothing or everything about the medications, your input is valuable.

Help shape future awareness campaigns: respond to the survey at the link below.  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=72f3976f2d&e=2e211ff547> https://badgut.org/biosimilars-survey-2019/ 

Right2Survive: Supporting Lung Cancer Survivorship 

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/83cfb8de-3707-41c6-a1d4-84ccfda15d80.png> 

Last year, CCSN created the Right2Survive campaign, which aims to provide a hopeful platform for patients to connect, and to demonstrate the need for new and innovative therapies so that lung cancer survivorship can increase. Our campaign was born out of a need to spread awareness and understanding of lung cancer through survivorship stories, and so far we have connected with over 600 supporters. If you would like to join our community or share your story, please visit  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7c7963aa77&e=2e211ff547> www.right2survive.ca. 

The Lung Association-Ontario Commits to Patients with Lung Cancer

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/6eff8dc2-72a0-46a8-8634-b70b4dc2ea42.png> 

The Lung Association-Ontario has recently developed a new role to help support lung cancer patients and their caregivers. The role of Patient Navigator-Lung Cancer is filled by a healthcare professional with expertise in lung cancer. This free service aims to provide guidance, information and support to the patient in a time of great uncertainty. 

For more information call the Lung Association at 1-888-344-5864 or email  <mailto:patientnavigator at lungontario.ca> patientnavigator at lungontario.ca. 

Updated Canadian Cancer Statistics

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/3194fc9e-962c-4b72-8680-c614021459e1.png> 

The Canadian Cancer Society has released its Canadian Cancer Statistics 2019 report, which provides foundational information on the burden of cancer in Canada. For example, it shows a projected 220,400 cancer diagnoses and 82,100 cancer deaths this year alone. The full report, along with supporting resources, can be found at  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=d1a9a4e085&e=2e211ff547> www.cancer.ca/statistics.

Join or follow the conversation online using #CancerStats 

Welcome to CCSN’s New Communications & Social Media Manager

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/14b688da-e4dd-446c-a46d-018ee29b0c10.png> 

CCSN recently welcomed our new Communications and Social Media Manager, Kelly McCarthy, to the team.

Kelly is an experienced communications manager with a background in the association space, where she has led successful campaigns to move the needle in public opinion, advocacy and support for represented groups. Kelly’s early start as a journalist has given her a unique ability to tell organizational stories to resonate with various audiences.

Kelly will be leading CCSN’s communications activities – including the CCSN website, social media, newsletters, webinars, media relations and outreach – towards supporting the mission of creating a better future for Canadians affected by cancer. If you have ideas for how CCSN can improve the standard of care for cancer patients, survivors and caregivers, reach out to Kelly at  <mailto:communications at survivornet.ca> communications at survivornet.ca. 

Not Enough: Share Your Story to Help MPs Understand the Need to Increase Employment Insurance Sickness Benefits Beyond 15 Weeks

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/ba8cc5c3-8bd3-4348-b4f1-94404b143191.png> 

As many cancer patients discover, 15 weeks of Employment Insurance Sickness Benefits is far too short to cover the time it takes for treatment to be completed and for patients to recover enough to go back to work. If you have run out of Sickness Benefits and have suffered financially or you had to return to work before you were ready, please share your experience with CCSN so we can let MPs know how 15 weeks EI Sickness Benefits is penalizing cancer patients. Please send your story to  <mailto:communications at survivornet.ca> communications at survivornet.ca . 

An Update from Clinical Trials Ontario

  <https://gallery.mailchimp.com/318d4e052fdd9593317146113/images/3faff67c-8f95-47d8-addf-7f262e0f84b9.png> 

Clinical Trials Ontario (CTO) has been working with health charities and patient organizations like CCSN to build tools and resources about clinical trials that are informed by and meet the needs of their communities. CCSN is one of the organizations that has been engaged from the start of these efforts, and this update is intended to help you see what this collaborative work has produced. Note that these tools and resources are applicable across Canada, not just in Ontario, and CTO is currently having all these tools and resources translated into French. Read the full article on the  <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=ff8ec81e2a&e=2e211ff547> CCSN website.

Follow us on social media!

Twitter
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c714787df3&e=2e211ff547> @survivornetca <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5ae8294d2d&e=2e211ff547>  - our main twitter account of information, news and resources on all cancers
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=930be155f3&e=2e211ff547> @bestbreastnews - information on breast health and breast cancer
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5aafb9db5d&e=2e211ff547> @prostatepost - news, events and resources on prostate cancer
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e12cee3214&e=2e211ff547> @canadianmeso - details on asbestos and mesothelioma
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=cde7760d19&e=2e211ff547> @LungCancerCan - focuses on lung cancer news, events and awareness
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=7584ffb547&e=2e211ff547> @CCSNpoli - general, non-partisan talk about the politics of healthcare and cancer care
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=157ecf2775&e=2e211ff547> @MedMarijuanaCan <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=bc22ca83b1&e=2e211ff547>  - news and information regarding medical marijuana
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=395df64db9&e=2e211ff547> @stomachcancerca - resources and articles on stomach cancer 
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=459885a59b&e=2e211ff547> @cervicalcanca - information and news on cervical cancer and HPV
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=10d84372a4&e=2e211ff547> @melanomacan - information and resources on melanoma
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=31034d2a3f&e=2e211ff547> @LiverCancerCA – news and information on liver cancer
 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=eac96dc9e0&e=2e211ff547> @headandneckcan - everything you need to know about head and neck cancer

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=c51cffa9fd&e=2e211ff547> Facebook  •   <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=8c7d94dd9b&e=2e211ff547> YouTube  •   <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=f0020ea50d&e=2e211ff547> Instagram

 <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e560d54dff&e=2e211ff547> Slideshare  •   <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=3780406528&e=2e211ff547> Pinterest  •   <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=58812560a2&e=2e211ff547> Weekly Newsletter (Paper.li)

Our mailing address is:

Canadian Cancer Survivor Network

1750 Courtwood Crescent,

Suite 210

Ottawa, ON K2C 2B5 

Canada

 <https://survivornet.us8.list-manage.com/vcard?u=318d4e052fdd9593317146113&id=d052a3ba08> Add us to your address book

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