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A Viking’s Challenge – March 2020

Melanoma patient Chris Isfeld is preparing for a 30 km race in subzero temperatures across frozen Lake Winnipeg. He’ll be racing his childhood friend Shawn Bjornsson to raise funds for Save Your Skin Foundation.

The event, which he’s calling A Vikings Challenge, will take place on March 7, 2020.

His Story

Chris Isfeld’s story with cancer starts in 2017. After dealing with back pain for a number of months, he felt sudden excruciating pain in his side. An ultrasound revealed lesions on his liver and large masses on his adrenals. A biopsy of the lesions confirmed  evidence of Melanoma. His scans revealed that the disease was very advanced and the tumor burden was severe.

Very quickly, the pain intensified. Chris had to go to the ER only a month after the biopsy. It was there he realized that he was partially paralyzed from the waist down. The doctors thought that his journey was coming to an end.

Chris was given lifesaving immunotherapy treatment just in time. The treatment was challenging but it proved to be effective. The cancer stopped growing and the side effects became more manageable over the next few months. Soon, he was walking again. By December 2018, just one year after his melanoma diagnosis, he was lacing up his running shoes again. 

The results of his latest PET/CT scan, on November 2, 2019, show an almost complete metabolic response; he is well on the way to becoming NED (No Evidence of Disease).

The Challenge

Chris had been frequently running and practicing yoga to overcome the physical and emotional anguish he was feeling.

In a recent interview with Global News, he said:

“A friend of mine, Shawn Bjornsson from Winnipeg, posted a photo after he did a 5K run in -40, and for some reason, I just made a comment and said, ‘Hey, I’ll race you across the lake,’ just as a joke, But a week later, I thought about it, and thought, ‘You know what, this is an absolutely great idea.’

“It gives me something to focus on, and obviously with my diagnosis, I had gotten to know the people at Save Your Skin Foundation very well, and decided that I should do it as a fundraiser and raise money for them.”

The Race

True to their Viking roots, neither of them can back down from a challenge. On March 7, 2020, the first ever ‘Ice Run Across Lake Winnipeg’ will take place. The race will be about 30 km from Grand Beach, Manitoba to Gimli, Manitoba. They will be running to raise money for Save Your Skin Foundation.

Chris is already a quarter of the way to his goal of raising $30,000 for Save Your Skin Foundation. To learn more about Chris’s story or to donate to his campaign, visit his fundraising page here.

For sponsorship info, please contact: chris.i@designerclosetguys.com

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World Cancer Day 2020

On February 4th, celebrate the 20th Annual World Cancer Day with us!

This international day focuses on raising awareness of cancer and encouraging its prevention, detection, and treatment.

Each year, hundreds of activities and events take place around the world, gathering communities, organisations and individuals in schools, businesses, hospitals, marketplaces, parks, community halls, places of worship – in the streets and online – acting as a powerful reminder that we all have a role to play in reducing the global impact of cancer. To find an activity in your area, consult the Map of Impact.

This year’s World Cancer Day’s theme,‘I Am and I Will’, is all about personal commitments to act. World Cancer Day believes that through positive actions, we can reach the target of reducing the number of premature deaths from cancer and noncommunicable diseases by one third by 2030.

The World Cancer Day website is jam-packed with useful resources, including a quiz you can take to find out what kind of health leader you are, suggestions of actions you could take based on the time you’re willing to invest, a custom poster making tool, several toolkits to help you spread the word, and much more.

Wold Cancer Day invites you to share your story and to read the story of others around the world. Whether you’re a patient, a survivor, a caregiver, a family member, a healthcare professional, or simply someone who cares, World Cancer Day is an opportunity to raise your voice and to take action to end cancer.

world cancer day

For more information, visit: www.worldcancerday.org.

To learn more about Save Your Skin Foundation initiatives to bring awareness and encourage the prevention, detection, and treatment of skin cancer and melanoma specifically, visit What We’re Working On.

 

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2020 Giving Hope Gala Postponed 

UPDATED MARCH 13, 2020:

2020 Giving Hope Gala Postponed 

After careful consideration of the current situation with COVID-19, and keeping the health and safety of our patient community our top priority, we have decided to postpone our Giving Hope Gala this year, previously scheduled to be held in Vancouver on April 30, 2020.
What does this mean for you?
We will provide full refunds for all tickets purchased. Our team will be reaching out to ticket holders within the next several days to make arrangements.

Our team will also be reaching out to sponsors and vendors to make arrangements for bookings and in-kind donations within the next several days.

Travel and hotel arrangements made for you by the SYSF team will be canceled. Any travel or hotel arrangements made by you are your responsibility to cancel.

We thank all of our volunteers, sponsors, and of course, our patient community for their understanding and support around this decision.

You can reach us anytime at natalie@saveyourskin.ca. We’ll be pleased to respond as quickly as possible.

If you still wish to make a donation on behalf of this year’s gala, you may do so HERE.

We hope everyone remains safe during this unique situation. We strongly encourage everyone, especially individuals at high risk such as those with compromised immune systems and chronic health issues, to familiarize themselves with the recommendations of the Centers for Disease Control and Prevention available HERE.

For more information on basic protective measures read the World Health Organization recommendations HERE.

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A Holiday Thank You from Kathy Barnard

At this time of year, I like to personally thank all of our generous donors for their support. Nothing quite describes the feeling I get when we receive a donation that allows us to say “Yes” to one more patient who needs Save Your Skin Foundation. Have no doubt you are definitely on Santa’s ‘nice’ list this year.

I would also like to thank all of our patients, caregivers, family and friends for their ongoing participation in our community. We’ve made great progress this year in improving psycho-social care and treatment options for melanoma and non-melanoma skin cancer patients. We could not have done this without the help and support of our amazing network of patients.

Here are some Save Your Skin Foundation 2019 highlights:

  • Giving monetary assistance to cancer patients travelling to receive treatment for transportation, accommodation, childcare and food costs
  • Leading awareness initiatives and programs to support emotional and mental wellness
  • Helping melanoma and non-melanoma skin cancer warriors to share their stories and connect with others
  • Bringing awareness and support to Canadians touched by ocular or uveal melanoma
  • Providing knowledge of the skin cancer treatment landscape and connections with Oncologists, Dermatologists, and other medical professionals
  • Meeting with government stakeholders, pharmaceutical companies, and medical professionals to bridge the gap between these groups and the melanoma/non-melanoma skin cancer patient

 

More people than ever need the emotional and financial support the Save Your Skin Foundation programs provide. Because of you, the Foundation continues to help patients across Canada to gain equal, timely access to new medications and to get the caring support they need.

 

 

One of the last items on our to-do list for the year was to write a letter to Santa to let him know what we would like for Christmas. Click here to read our letter.

Wishing you and your family a holiday season that is merry and bright.
From Kathy Barnard and the Save Your Skin Foundation team.

 

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Click on our Advent Calendar for Daily Inspiration!

December can be a difficult month for those facing challenges in their lives. Every day until Christmas, we will be posting messages of Hope to help alleviate those winter blues. 

Check back every day for a new message of Inspiration

Click on each number below to view the message of the day:

 

                                 

                                  

                                    

                               

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#EyeGetDilated – Awareness Campaign for Ocular Melanoma – November 2019

The 4th annual #EyeGetDilated campaign kicks off November 1st!

Throughout the month, CURE OM, an initiative of Melanoma Research Foundation in the United States, will be utilizing social media, guest blogs, videos and more to promote and educate about the importance of eye health and encourage everyone to include a dilated eye exam in their annual wellness routine.

Early detection is incredibly important for many eye diseases, including ocular melanoma.

To expand their reach internationally, CureOM has invited Ocumel Canada to partner with them for this year’s awareness campaign! If you’d like to participate, please re-post information from the CURE OM and MRF, and Ocumel Canada, social media channels during the month to spread the news about the importance of dilated eye exams, and share your own messages too! You can also request our free “Missing a Check?” postcards to take to your local doctors to include in their annual wellness reminders or click here to download a PDF copy. Suggested places to hand out postcards/flyers (with permission) include your primary care/family physician, optometrist and dermatologist. Email us to find out more!

To read more about the role of a Dilated Eye Exam in early detection of Ocular Melanoma, please click here to read this blog by Carol L. Shields, MD:

Get your eyes dilated once a year for life. Detection of melanoma when it is small is important as life prognosis is far better. It should be known that about 10% of Caucasians in the United States have a choroidal nevus and this could be a precursor to melanoma. Any patient who has different colored iris should be checked twice yearly, as this too could be a precursor to melanoma. If there is a family history of other cancers like renal cell carcinoma, mesothelioma, or others, you should have your eyes checked as uveal melanoma can occur also with these other malignancies under the umbrella syndrome called BAP 1 cancer predisposition syndrome.  Click here to read the full article.

And click here to read more about Ocumel Canada and resources we offer across Canada: About Ocumel Canada

 

 

 

 

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SYSF Webinar: Merkel Cell Carcinoma

Webinar Recording Available!

Merkel Cell Carcinoma, From Diagnosis to Treatment

With Presenter:  Marco A. J. Iafolla, MD, MSc, FRCPC

Medical Oncologist, Skin and GU Malignancies, Department of Oncology, William Osler Health System

Click here to watch the recording: Merkel Cell Carcinoma: From Diagnosis to Treatment

Description:  Dr. Marco Iafolla, Medical Oncologist at William Osler Health System, reviews the latest news, clinical data and other updates as they relate to the treatment of merkel cell carcinoma (MCC), a rare yet aggressive non-melanoma skin cancer.  Dr. Iafolla provides an update on the science behind primary and metastatic MCC diagnosis, an overview of the disease features, staging and prognostication, surgery and treatment options including immuno-oncology for MCC, and the impact of all of this to patients.

Also, click here to view more resources on our new page all about MCC: https://saveyourskin.ca/about-merkel-cell-carcinoma/

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Vote Health First This Coming Election

Vote Health First is an awareness campaign, with a supporting website, created to help Canadians have their voices heard regarding important health care issues surrounding the 2019 federal elections and beyond. Click here to check it out: VoteHealthFirst.ca

Please join the Vote Health First letter writing campaign and let your local candidates know that it’s time for all political parties to prioritize the needs of patients, and announce their support for a comprehensive health care strategy that will help to keep people in Canada healthy.

Canadians are generally proud of our universal health care system, but it is clear more needs to be done.

Canadians continue to struggle to access the healthcare that they need.

Shockingly, some people are forced to sell everything to get proper cancer care in Canada.

It’s time for change.

Click here to view, create, and send your letter from the customizable form

Please feel free to add a few sentences to the customizable letter about your personal experience. Include who you are (e.g., a cancer survivor; a person living with psoriasis, psoriatic arthritis or another chronic health condition; a family member of a patient). Share a sentence about your personal experience(e.g., how long have you lived with your condition and is it treatable? Curable?) Add a sentence about why a strong health care system is important to you (e.g., you have trouble affording your treatment; the treatment you need is not covered by your public or private insurance; you are concerned about managing your condition, or your family member’s condition, as you or they get older).

Take Action Now: HealthFirstCanada.ca

 

iPolitics Through the Patients’ Eyes

Oct 1 Through the Patients' EyesOn October 1, 2019, Save Your Skin Foundation, Myeloma Canada, Canadian Psoriasis Network and CONECTed sponsored and participated in this “clutch conversation” on Canada’s health care policy through the patient’s eyes. This event was hosted by iPolitics. The moderated panel discussion was followed by an audience Q & A. People came in person to the iPolitics offices in Ottawa and joined virtually.

To view the recording of this event and others, please CLICK HERE

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Patient Insights on Canadian Cancer Care: All.Can Canada Report

New Canadian report breaks down patient-reported waste and inefficiency by province

The Canadian All.Can cancer initiative has published a major report of cancer care recommendations based on patient insights following a Canada-wide survey conducted last year that gathered insights from cancer patients and their caregivers. Of the 314 responses received, 255 of these were selected for a provincial analysis comparing results from British Columbia, Alberta, Ontario and Quebec.

The report, Patient insights on Canadian cancer care: opportunities for improving efficiency, highlights four major areas of cancer care inefficiency from the patient perspective. All.Can defines inefficiency in cancer care as anything that does not focus on what matters to patients.

Click HERE to read the report

“Patients are almost never included in conversations about cancer care. We need to listen to what patients say would improve their experience of care,” said Kathy Barnard, who is a stage IV melanoma survivor, Founder of Save Your Skin Foundation, and a steering committee member of the All.Can international group. “Ignoring the findings of this report would be a missed opportunity to do the right thing by patients and make changes that could make a real difference,” said Barnard.

Although some areas of healthcare in Canada are publicly funded in whole or in part, cancer patients – particularly those in rural areas and/or with limited access to financial resources – often experience high out-of-pocket health costs due to travel, missed work, and uninsured or under-insured drug expenditures. Alternatively, they forgo necessary treatments because they cannot afford them, with dire health consequences.

The cost of cancer care in Canada has risen steadily from $2.9 billion in 2005 to $7.5 billion in 2012. There is an urgent need to improve efficiency and reduce waste in cancer care in Canada. Improving efficiency is not a question of linear cost-cutting, but of finding ways to allocate resources more efficiently to achieve better health outcomes for patients. The report identifies four key areas for improvement based on patient insights. Below are a selection of highlighted findings from the survey report:

  • Ensuring a swift, accurate and appropriately delivered diagnosis
  • Improving information-sharing, support and shared decision-making
  • Making integrated multidisciplinary care a reality for all patients
  • Addressing the financial implications of cancer

All.Can Canada urges policymakers and the entire cancer community to act on these findings – as making these changes could make a real difference to patient outcomes and experiences of care, and the financial impact cancer has on patients, their families, the health system, and society as a whole.

This is supported by existing evidence: faster diagnosis can improve patient survival and is associated with reduced treatment costs for many cancers. Shared decision-making is associated with improved patient outcomes. To download a full copy of the All.Can international survey report, Patient insights on cancer care: opportunities for improving efficiency, visit: https://www.all-can.org/what-we-do/research/patient-survey/

 

To read more about All.Can Canada and our work with All.Can globally, please click here:

What We’re Working On: All.Can Canada

 

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Patients Redefining Healthcare Summit

Join Save Your Skin Foundation, Canadian Psoriasis Network, Schizophrenia Society of Ontario, and other patient groups for the fourth annual Summit,  A Dose of Reality: Patients Redefining the Future of Health Care in Canada. This year’s Summit builds on the last three Summits which provided an unprecedented opportunity for patients, caregivers and patient representatives from diverse disease and disability groups to come together to discuss a shared vision for health care in Canada.

Register now: https://2019patientsummit.eventbrite.ca

This year’s Summit will update participants on what’s happening in health care across the country to improve value for patients. Summit topics will focus on current Value-Based Health Care initiatives in Canada and on federal health care plans. In addition, the Summit will invite key representatives from each province to share health policy updates and discuss their current and/or potential impact on provincial health care systems and on patients. The event will also strive to renew the mandate of the patient working groups for 2020.

Click here to read about the 2016, 2017, and 2018 Summits

We welcome you to share this invitation broadly with your network.

Thank you from the event hosts,

Save Your Skin Foundation
Canadian Psoriasis Network
Schizophrenia Society of Ontario

 

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