[Hopespringpcsg] FW: CCSN End-of-Year Update
Glen Tolhurst
glen46nor at gmail.com
Fri Dec 20 16:26:56 EST 2019
Hi all:
See below for the e-newsletter from CCSN.
There is a lot of info in it.
After the article on Prostate Cancer Canada amalgamating with Canadian Cancer Society, click on the green box “read more” for info on the merger.
Take care,
Glen
From: Canadian Cancer Survivor Network [mailto:info at survivornet.ca]
Sent: December 20, 2019 11:32 AM
To: Glen
Subject: CCSN End-of-Year Update
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Canadian Cancer Survivor Network
End-Of-Year Update
December 20, 2019
Season's Greetings to You!
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L to R: At the Ontario Legislature, cancer survivor Julianna Leone, pictured with CCSN President and CEO Jackie Manthorne, and Julianna's father Reno Leone, who is also a cancer survivor.
Being diagnosed with cancer is something no one wants to hear. Cancer presents many different challenges, complicating factors, and concerns for patients and their caregivers. There are approximately one million Canadians who are survivors of cancer for more than 10 years – a figure that reflects just how many Canadians have been diagnosed with cancer, which has risen to nearly one-in-two.
The Canadian Cancer Survivor Network continues to provide opportunities for cancer patients, survivors, and caregivers to have a voice. Our network ensures policy makers understand life after cancer, and garners support for initiatives such as shorter wait times between diagnosis and treatment, a shorter process of cancer medication approval, and alleviating the financial after-effects of cancer. The importance of having a network that provides a voice for survivors, is an extremely important resource for so many people across our country.
Earlier this month, cancer survivors and patient advocates Julianna Leone and Reno Leone - shown in the photo above - recently had the opportunity to meet with Terence Kernaghan, MPP of London North Centre. During their meeting, Julianna and her father Reno were able to share their personal stories about their journeys with cancer, and were able to contribute some of their ideas to MPP Terence Kernaghan, on how provincial government can continue to support cancer patients and survivors.
Survivors meet with Policy Makers
In addition to meeting with MPP Terence Kernaghan, Julianna and her father - along with many more cancer survivors who were present, were able to meet with MPPs, healthcare decision making stakeholders, and CCSN partners who attended the Legislative Reception at Queen's Park.
To sum up Julianna's experience with sharing her story, and meeting with provincial decision makers, Juliana shared “It’s an honour to be part of such an amazing organization! The legislative reception I attended was fantastic, and I found meeting with MPPs to be such an important experience for me to have as a survivor. I have to say that the Canadian Cancer Survivor Network outdid themselves. It was by far the largest turnout I’ve seen to date – and I know without a doubt, support will continue to grow!”
Leone also shared “Cancer does not discriminate, and one-in-two Canadians will be affected by the disease. Cancer patients, survivors and caregivers are extremely fortunate to have CCSN sharing such dignified awareness about this deadly disease. And, in order for CCSN to continue promoting health for such a large percentage of Canadians, I urge you to think about supporting this great cause.”
Help CCSN continue to provide opportunities for survivors.
Please make the decision to give today. No donation is too small, and every single dollar raised makes a difference – this means your donation will positively impact the lives of cancer patients, survivors, and their caregivers. All donations received on, or before December 31st, 2019 are eligible for a tax receipt for 2019. Additionally, donations make an excellent gift for friends, family members, and loved ones on your holiday shopping list. We’re grateful for your support of our organization, and we sincerely thank you for considering us in your holiday giving. I would like to take this moment to wish you and your family a warm and safe holiday season.
Happy Holidays,
Jackie Manthorne
President and CEO
Canadian Cancer Survivor Network
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Another cancer organization disappears
Prostate Cancer Canada and the Canadian Cancer Society agree to amalgamate
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On December 12, 2019, Prostate Cancer Canada and the Canadian Cancer Society (CCS) announced that they are amalgamating, much as the Canadian Breast Cancer Foundation (CBCF) merged with CCS in early 2017. Not long before that Willow Breast & Hereditary Cancer Support merged with the Canadian Breast Cancer Foundation.
While the Canadian Cancer Society has promised to prioritize the Canadian Breast Cancer Foundation and now Prostate Cancer Canada’s initiatives and activities, it is not clear to patients, caregivers and survivors that breast cancer is prioritized in services, funding support to local breast cancer organizations, or research. Indeed, what is visible on the Canadian Cancer Society’s website are fundraising events like the CIBC Run for the Cure, which was the Canadian Breast Cancer Foundation’s signature fundraising event. Additional information on fundraising events for breast cancer can be found at <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=e7bec22fc7&e=2e211ff547> https://www.cancer.ca/en/get-involved/support-us/breast-cancer-futures-fund/breast-cancer-corporate-partners/?region=on.
However, Prostate Cancer Canada and the Canadian Cancer Society state that they are excited to embark upon a strategic amalgamation that will strengthen and support cancer research, education and the needs of Canadians and their families dealing with the disease.
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Peter Coleridge, President and CEO of Prostate Cancer Canada
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Andrea Seale, Chief Executive Officer of the Canadian Cancer Society
“For 25 years, Prostate Cancer Canada has been the leading national charity investing in world class research, increasing awareness about the disease and supporting Canadians and their families dealing with the most common form of cancer among men,” said Peter Coleridge, President and CEO of Prostate Cancer Canada.
“We have helped reduce the death rate from the disease by 50%, and with 1 in 9 Canadian men developing prostate cancer in their lifetime, this amalgamation will help ensure that our impact on patient outcomes will not only continue but also increase.”
“We have enormous respect for Prostate Cancer Canada and we’re excited to join forces,” said Andrea Seale, Chief Executive Officer of the Canadian Cancer Society. “A combined organization will allow us to increase impact – funding life-saving research and making life better for people with cancer, their caregivers and families. As we eliminate duplication and share best practices, more donor dollars will go to this important mission. Donors ask us why there is so much duplication among cancer causes – instead of competing, we’re joining together to redefine the cancer charity sector in Canada.”
Andrea Seale will lead the amalgamated organization. Peter Coleridge is committed to overseeing a smooth transition through the amalgamation, which requires federal government review and approval. It is anticipated that the process will be finalized in early 2020.
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The merger of large organizations can have detrimental effects on the ability of local groups and events which support cancer patients, caregivers and survivors. As an example, check out the article entitled Breast cancer survivors uncertain of funding for retreat weekend at the following link: <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=37d7ab9ac3&e=2e211ff547> https://www.cbc.ca/news/canada/new-brunswick/breast-cancer-retreat-funding-cut-1.4997227
<https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=ed20961b87&e=2e211ff547> READ MORE
CCSN Legislative Reception at Queen's Park
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CCSN held a Legislative Reception December 11, 2019 at Queen’s Park, in collaboration with the Canadian Association of Retired Persons (CARP).
The reception’s theme of WE are emPOWERED to fight cancer, was centred around the message that while cancer affects all of us, it disproportionately affects seniors, with nine out of ten cancer cases affecting individuals 50 years of age and older.
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>From L to R: MPP Joel Harden, Marissa Lennox Chief Policy Officer of CARP, Jackie Manthorne CCSN President & CEO, Dr. Wheatley-Price, Conservative MPP Daisy Wai, lung cancer survivor Larry Frydman, and George Habib President & CEO of the Lung Association of Ontario.
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>From L to R: George Habib President & CEO of the Lung Association of Ontario, and Jackie Manthorne CCSN President & CEO
It was a busy day at Queen's Park, Canadian Cancer Survivor Network and the Lung Association of Ontario had separate receptions at different times during the day - both organizations supported each other's events.
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Multiple cancer patient groups, CCSN partner organizations, survivors, patients, and caregivers were in attendance. The patient groups in attendance as CCSN's event included:
After Breast Cancer, The Association of Local Public Health Agencies, Bladder Cancer Canada, The Brain Tumour Foundation of Canada, The Canadian Cancer Clinical Trials Network, The Canadian Cancer Society, The Canadian Partnership Against Cancer Cancertainty - who works to have take-home cancer medications paid for in Ontario, GIST Sarcoma Life Raft Group Canada, Kidney Cancer Canada, The Leukemia & Lymphoma Society of Canada, Ontario Chapter The Lung Association of Ontario, Lung Cancer Canada, The Melanoma Network of Canada, The Ontario Lymphedema Association, Pancreatic Cancer Canada, and The Prostate Cancer Canada Network - Brampton Chapter.
<https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=224054adf1&e=2e211ff547> READ MORE
Who are you? Where are you?
2019 CCSN Newsletter statistics
A big thank you to 471 respondents who took the time to complete CCSN’s questionnaire and helped make it a success!
And a special congratulations to Deb Edmonds, Greg Whittake, Joan Martin and Michelle Nolan who each won a $20 Amazon Gift Card!
CCSN ambition remains to ensure that we are a truly patient-centered organization that routinely consults members and partners to shape what we do.
We are excited to share some exciting results:
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Alberta the second province to switch patients from biologics to biosimilars
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Last month we reported that patients with diabetes, rheumatoid arthritis, inflammatory bowel disease (IBD) and other serious conditions are being forced by the government of British Columbia to switch from their current, stable biologic medication to a biosimilar drug.
>From July 1, Albertans will only have biosimilar versions of the originator biologics to treat the following conditions: Ankylosing Spondylitis; Plaque Psoriasis; Psoriatic Arthritis; Rheumatoid Arthritis; Crohn’s Disease; Ulcerative Colitis; Diabetes (type 1 and 2); Neutropenia; Multiple Sclerosis. If you live in Alberta and you are concerned about this forced switching, please consult your doctor.
For additional information on this switch, please go to <https://survivornet.us8.list-manage.com/track/click?u=318d4e052fdd9593317146113&id=5ecb5ae60c&e=2e211ff547> https://www.alberta.ca/biosimilar-drugs.aspx
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