May was a busy month at Bladder Cancer Canada and around the world as we partnered with the World Bladder Cancer Patient Coalition and its members to create bladder cancer awareness. Through the use of the hashtags #bladdercanceraware and #bladdercancerawarenessmonth, we delivered engaging messages to our social media sites and our bladder cancer community across the country, every single day in May (and sometimes more!).
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From lighting up the Government House in St. John's, Newfoundland to BC Place in Vancouver, British Columbia, we spread awareness of bladder cancer from coast to coast! |
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This newsletter covers all the highlights for the month, including the announcement of our new Executive Director, our 2020 annual report, our first podcast that tells the story of BCC, and two very unique patient perspectives - Blair, diagnosed with urothelial bladder cancer and a BCC volunteer, and Jess, a young and healthy man who underwent testing to rule out bladder cancer. Both perspectives are interesting and sure to capture your heart!
We are always looking for new ways to share how we support patients, raise awareness and increase research to Canadians across the country. We know that 12,000 Canadians will be diagnosed with bladder cancer this year and that the earlier the diagnosis, the better the outcome. Please share this newsletter, direct people to our website or share our social sites with them. You could also consider making a small donation to BCC - we will use your donation in a responsible and transparent way. Funds are used to help patients directly, through support, awareness and research.
As always, we genuinely appreciate your support for helping Canada be more #bladdercanceraware!
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Welcome Michelle Colero as Executive Director |
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Great news this #bladdercancerawarenessmonth as we welcome a new Executive Director to our mighty team! We’re excited to have Michelle Colero help us in our mission to increase patient support, make more Canadians #bladdercanceraware and continue to fund research.
“Michelle brings incredible strengths to the Bladder Cancer Canada team,” remarked survivor and Volunteer Board Chair Ferg Devins. “She is an experienced leader in the not-for-profit sector with over 20 years of progressive leadership positions developing and executing strategies while delivering successful campaigns for local, national and international health, social services and environmental charities.”
Please join us in extending a warm welcome to Michelle. Read more here.
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Our 2020 annual report focuses on strength and perseverance |
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In a year when the world grappled with a severe health crisis, Bladder Cancer Canada was fortunate to have made great progress on all facets of its mission. This includes raising public awareness, extending patient support and funding research. We owe our achievements to the hard work, resolve and generosity of our many volunteers and supporters. We thank each one of you from the bottom of our hearts. We couldn’t have done this without you!
Visit our website here to see the annual report.
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The story of Bladder Cancer Canada |
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David Guttman, co-founder of Bladder Cancer Canada, recalls how scared and alone he felt when he received his bladder cancer diagnosis 25 years ago.
Back then, awareness about bladder cancer was very low. Patients and their loved ones faced a long and lonesome road through a difficult treatment process. Often, their only support system was the medical teams who tended to their disease.
Even as he battled his own cancer, David wanted to help other Canadians who were similarly impacted, by introducing that missing key element – moral support. With help from likeminded people, he established Bladder Cancer Canada in 2009 to provide patient support and shine a light on various bladder cancer issues.
Today, at 80, he recounts his long journey and what drove him to become one of Canada’s strongest advocates for bladder cancer awareness. Read his story here or listen to our very first podcast (hosted by Zoomer Radio’s Jane Brown) by clicking here.
Help us figure out the best way to deliver content to you using the poll below.
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For stories like David's, I prefer to:
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Having access to reliable information can give you more control over your disease |
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As part of Bladder Cancer Awareness Month, we were so proud to collaborate with our friends EMD Serono and Pfizer on this patient video, featuring an important member of our bladder cancer community. Blair has urothelial bladder cancer and is a proud volunteer at Bladder Cancer Canada. In this video, he talks about how having access to reliable information can give you more control over your disease.
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Blair, like many other Canadians, will benefit from the recent news about the maintenance and treatment of patients with advanced bladder cancer, including metastatic urothelial carcinoma. You can read the news release from EMD Serono and Pfizer here. Thanks to all involved in this initiative as we work towards making more Canadians #bladdercanceraware!
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40 days in the shadow of bladder cancer |
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As a relatively young and fit Torontonian, Jess was shocked when his doctor said he should get checked for bladder cancer. The red flag? Traces of blood in his urine found during his annual health check. With his cystoscopy 40 days away, a worried Jess found the Bladder Cancer Canada website and connected with members on the forum. Read what he found here. |
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Patient participation in trials, panels and surveys |
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Bladder Cancer Canada’s primary goal is to support Canadian patients with their bladder cancer journey. We are also very closely associated with our Medical Advisory and Research Boards and their work in Canada, along with the trials and research projects that they are involved with. On occasion, our researchers and pharmaceutical companies may be undertaking research or initiatives that requires input from our patient community.
As a result, BCC may be sending you notifications of these trials, panels and surveys for your consideration. Patient participation is critical to advancing these research and patient support programs which leads to better treatments and outcomes for bladder cancer patients across Canada.
Our goal is to have a roster of patients willing to participate in these initiatives - if YOU are interested in joining a team of fellow bladder cancer patients, while contributing to advances in research, care and support for our patient community, please let us know.
Send us a private and confidential email to patients@bladdercancercanada.org, care of Ferg Devins, BCC Chair, providing your name, age, gender, geographic location, language preference, bladder cancer type (non-muscle invasive [low or high grade], muscle-invasive [bladder sparing, radical cystectomy - neobladder, ostomy] or metastatic) and your BCG experience (responsive or non-responsive to BCG). Thanks for playing your part in the fight against bladder cancer.
Please see below for upcoming opportunities to participate and share your experience with bladder cancer and your treatments.
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Do you have stage II or higher muscle-invasive or metastatic bladder cancer? |
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Are you, or someone you love, living with stage II or higher muscle-invasive or metastatic bladder cancer? Then we want to hear from you!
The Canadian Agency for Drugs and Technologies in Health (CADTH), an important drug review body that evaluates the cost effectiveness of new drugs, will be reviewing Padcev™ (enfortumab vedotin-ejfv) for the treatment of adults with bladder cancer and cancers of the urinary tract (renal pelvis, ureter or urethra) that has spread outside the bladder or cannot be removed by surgery. CADTH does this evaluation to determine whether to recommend the drug for reimbursement by provincial and territorial drug plans.
To ensure that advanced or metastatic bladder cancer patients and their families have their voices included in this vital review process, Bladder Cancer Canada invites you to participate in a short, 20-25 minute survey. The survey results will be included in our patient input submission to CADTH, which will help inform their recommendation to make Padcev accessible through publicly funded drug plans to patients who would most benefit.
If you have specific experience with Padcev we urge you to contact us as well as complete the survey.
Click here to take the survey today! Participation is voluntary and anonymous. You do not need to live in Canada to complete this survey. Survey closes June 11, 2021. If you need help doing this or would like to take this survey by telephone, please contact: info@bladdercancercanada.org or 1-866-674-8889.
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Do you have low grade, non-muscle invasive bladder cancer? |
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Dr. Paul Toren at the University of Laval in Quebec City is seeking patients and caregivers' perspectives leading up to a research project related to treatments for low grade non-muscle invasive bladder cancer patients.
Dr. Toren is looking for patients and/or their family members to participate in a 30 minute survey, virtually, to understand patient perspectives.
The research team will follow up with you to better understand your situation and potential participation in the study.
For more information, click on Dr. Toren's video below.
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Many thanks to our latest fundraisers! |
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Many thanks to our friends and supporters who recently held personal fundraisers for anniversaries, birthdays and other important life events to support BCC and the work we do.
Shout-outs go to Andrea, Naomi, Carollyne, Emily, Arin, Andrew and André. We so appreciate all that you’ve done!
Be recognized! Visit our website here to learn how to host your own fundraiser.
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Please join us on social media where we’ll be sharing updates and photos from our bladder cancer community. These social media sites are a great resource for patients, survivors and caregivers.
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Copyright © 2021 Bladder Cancer Canada. All rights reserved.
You are receiving this email because you have registered on our website or expressed an interest in receiving more information about bladder cancer or Bladder Cancer Canada.
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