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National Cancer Survivors Day

June 7th, 2020 is National Cancer Survivors Day!

         As Melanoma Awareness Month is so closely followed by National Cancer Survivors Day, which takes place on the first Sunday in June, the two occasions feel symbolically connected. May is a month wherein those who have been touched by melanoma, ocular melanoma, or non-melanoma skin cancer take the time to remind themselves and others of the importance of skin cancer prevention and detection, and emotional and financial support for patients. The conversations that we have throughout Melanoma Awareness Month traverse the most early days of diagnosis, through the creation of a healthcare plan, treatment, and survivorship. Therefore, National Cancer Survivors Day– which is June 7th this year– feels like an appropriate, and especially hopeful, way to conclude the journey that we trace throughout Melanoma Awareness Month, from diagnosis to survivorship. Therefore, we would like to bridge Melanoma Awareness Month and National Cancer Survivors Day reminding you to participate in this important occasion!

         National Cancer Survivors Day is a not-for-profit organization that began in the United States, but is beginning to gain a global following. To help spread the word about National Cancer Survivors Day, they have a number of social media graphics that you can share, and many resources for organizing your own National Cancer Survivors Day event. There is also a great list of resources on their website of issues surrounding survivorship, other non-profits, statistics, and news for survivors.

         Melanoma survivor and Save Your Skin Founder and President Kathy Barnard has previously written: “[when I was diagnosed] I realized how big my support network was. I had a lot of family, friends, colleagues and people in the community who were there for me. Together we stand strong. And today, I have new friends that I have created, new people I have tried to help. I want to continue building a community where people living with melanoma are not alone.” This desire to build community has always been at the core of Save Your Skin Foundation. We hope that you will finish off Melanoma Awareness Month by participating in National Cancer Survivors Day, in order to support and honour the cancer survivors in your life.

 

 

 

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New Survey Results Show Gaps in Knowledge About Melanoma

WE NEED TO STEP UP OUR KNOWLEDGE ABOUT MELANOMA                                                                                                                   

A recent survey of adult Canadians, conducted by Leger in March 2020 in collaboration with Novartis Pharmaceuticals Canada Inc. and Save Your Skin Foundation, shows gaps in knowledge about the deadliest skin cancer, melanoma. 

Here’s what the survey told us:

About one quarter of Canadians (26%) are not aware or don’t know that spending more time in the sun increases their risk of melanoma.

Only half of respondents (51%) say they are knowledgeable about melanoma.

Canadians who claim to be knowledgeable about melanoma are significantly more likely to believe that they are at risk of melanoma (48% vs. 24%) of those who say they are not knowledgeable.

More than half of Canadians (55%) either don’t know or incorrectly identified that small amounts of sun exposure without protection can lead to melanoma.

60% of Canadians have a misconception that melanoma mainly occurs in people with fair skin.

Only 39% correctly identified that melanoma can occur in all skin types.

A majority of Canadians (58%) have a misconception that treating melanoma is a simple procedure.

Two thirds of Canadians (66%) say they would want to know their mutation type if diagnosed with melanoma.

Only 15% strongly agree that knowing their mutation type could change the course of their melanoma treatment journey.

Only half of Canadians (48%) believe that melanoma is the most dangerous form of skin cancer. In the under 55 group, just over one third of the Canadians (37%) identify melanoma as the most dangerous form of skin cancer.

Knowledge is power. Help us get Canadians more informed about melanoma.

To download a PDF version of these findings, click here.

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Melanoma Awareness Month: Patient Support Resources

 

Everyone has different support needs, especially in the context of a melanoma, ocular melanoma, or non-melanoma skin cancer diagnosis. Whether you are looking for community, information, or strategies for self-care, we have resources available for you. We encourage you to take a look through our website to find what works for you, but for now, here is an overview of what we have to offer. If you are particularly looking for information and support related to the COVID-19 pandemic, you should check out our COVID-19 information hub.

In our 2017 survey report, “The Affects of Melanoma on the Mental Wellness of Patients, and the Landscape of Mental Health Support in the Canadian Melanoma Community,” Save Your Skin found that the effects of a melanoma diagnosis on the mental wellness of a patient is a real and urgent concern. Survey participants reported needing support with fear, grief, end-of-life planning, their diagnosis, next steps, living with cancer, family support, survivorship, and hope. The most ideal forms of support for participants, according to the survey, are group therapy, one-on-one therapy, and family support. The majority of participants (66% in our English survey and 84.21% in our French survey) reported wanting mental wellness support after their cancer diagnosis. Therefore, if you are fighting cancer or know someone who is, it might be helpful to participate in or share the resources below!

 

Webinars

Save Your Skin has been running webinars on medical and patient support topics since 2015, the video and audio recordings of which are archived on our website. These webinars are not only an excellent educational resource, but are great for connecting with the oncology community and meeting other patients and survivors. In terms of mental health support and community, the “Mental Wellness & Support After a Cancer Diagnosis,” “Living Beyond Cancer,” and “Surviving Melanoma: A Discussion on Survivorship” might be especially interesting to you– however, it is definitely worth looking through the entire list!

 

Patient Support Group Chats

On the first Thursday of every month, we host our informal Patient Support Group Chats. These meetings are free, can be joined by phone or online, and are open to melanoma, ocular melanoma, and non-melanoma skin cancer patients and survivors. These group discussions include patients and survivors from across Canada, and members of the Save Your Skin team, including Founder Kathy Barnard.

In addition to our support group, you can find a list of other support group options on our Additional Resources & Support Groups page, which may include something that is more local for you.

 

Emotional and Mental Wellness Resources Page

Our Emotional and Mental Wellness Resources page features many resources related to mental wellness. These include guides for coping with overwhelm, catastrophic thinking, and grief, for improving your quality of life, and for maintaining support networks and hope. This page also includes a link to Psychology Today’s chronic illness therapist search engine, which will help you find options for therapy in your area. On this page, you can also view our guide to self care after a cancer diagnosis

 

Community and Hope

If you are looking to make connections with people who have gone through a melanoma, ocular melanoma, or non-melanoma skin cancer diagnosis, or to read stories of hope, you might also be interested in our survivorship initiatives, such as Melanoma Through my Lens, which features the stories of six Canadian melanoma survivors, or I’m Living Proof, a global map that showcases the stories of many melanoma, ocular melanoma, and non-melanoma skin cancer survivors. If you are interested in speaking to someone you see on I’m Living Proof, you can request to connect with them to be put in touch.

We hope that Save Your Skin has something to support your mental wellness, wherever you are in your journey. This Melanoma Awareness Month, consider taking the time to investigate what resources may help you, or share the graphic below to your community, as you never know who might need help. Remember: hand in hand, we fight skin cancer together.

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To Protect Yourself from Melanoma, Look UP

Our friends at Euromelanoma, in collaboration with the Global Coalition for Melanoma Patient Advocacy (an initiative of the Melanoma Research Foundation, of which SYSF is a member) have launched a new campaign to encourage people to do monthly skin checks. The campaign encourages people to “Look Up”.

If they see the sun, people should take action to protect their skin. If they see the full moon, they should perform a monthly skin check.

Help protect your loved ones and spread awareness of the importance of skin checks by downloading and sharing this poster:

To read the full report on global skin cancer statistics which inspired this campaign, please CLICK HERE.

Save Your Skin Foundation is proud to support and share this campaign to increase awareness of melanoma and non-melanoma skin cancers.  We thank Euro Melanoma for their hard work and collaboration, and we appreciate the sponsors and partners of the project.  Watch our social media channels for more on this initiative, and as always, feel free to contact us if you would like more information! natalie@saveyourskin.ca

About the Global Coalition for Melanoma Patient Advocacy: Click here to go to their introductory web page.  Save Your Skin is proud to be working with US-based Melanoma Research Foundation and the many other groups in the Coalition.  More on this is developing as we work together from our locations around the world to improve the lives of melanoma patients and their families.

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COVID-19 Cancer Patient Support Hub

To respond to the immediate, practical needs of Canadian cancer patients during COVID-19, Save Your Skin Foundation and 11 other Canadian oncology patient support groups have created the COVID-19 Cancer Patient Support Hub.

Initiatives include an online information hub, mental health and wellness resources, and practical support with volunteer assistance.

Click here to visit the COVID-19 Cancer Patient Support Hub

Read the press release here:

Canadian Cancer Patient Groups Rally to Help Cancer Patients Facing COVID-19 Challenges

May 5, Toronto: Responding to the unprecedented challenges posed by COVID-19, leading oncology patient groups are launching today a national patient-led initiative to support the immediate, practical needs of people living with cancer.

The COVID-19 Oncology Support Task Force has launched the COVID-19 Cancer Patient Support Hub under the umbrella of All.Can Canada, a multi-stakeholder group working in oncology. Initiatives will include an online information hub, mental wellness and practical supports, with volunteer assistance. It includes a public campaign to raise awareness about the unique challenges faced by an estimated 2.1 million Canadians currently living with cancer.

“I was in desperate need of help when I learned that I could no longer get from BC to Ontario for my cancer treatment. I turned to Save Your Skin Foundation, a national skin cancer patient organization, to help me cope with this news and to organize alternatives. Patients need the services this Task Force is providing,” explains Tanya, a melanoma patient.

“Kathy Barnard, the President of Save Your Skin Foundation, called me and told me this story. Other stories started to surface from cancer patients about the practical and emotional issues they were experiencing as a result of COVID-19. We knew we had to act,” said Louise Binder, the lead health policy consultant on the Task Force.

“Cancer patients across Canada are anxious and trying to cope during social isolation orders. They are telling us they need support as medical appointments and treatments are cancelled or postponed,” says Christina Sit, Program Manager, Lung Cancer Canada. “We knew this was bigger than any one organization could handle.”

Dr. Michael Smiley, Medical Oncologist and Clinical Researcher at the Cross Cancer Clinic in Edmonton, lauds the community initiative. “This pandemic has added to the stressful situation for cancer patients. Mental wellness supports and practical help is sorely needed and much welcomed,” he said.

“The Quebec Cancer Coalition is glad to participate in this initiative in solidarity with other patient organizations from the rest of Canada, says Eva Villalba, Executive Director, Quebec Cancer Coalition. “Our Coalition will happily contribute the Quebec perspective to the All.Can Task Force on COVID-19 and cancer, and share the work and resources we have developed locally with organisations in other jurisdictions. Together we can make a greater impact!”

A cancer diagnosis is devastating. COVID-19 exacerbates mental health issues, social and physical isolation and difficulty accessing treatments and essential services. Canadians are asked to share information about the site, www.COVID19OncologyResources.ca, with anyone they know living with cancer, caregivers, their families, and anyone else affected by cancer.

Patient groups participating in the Task Force include:

All.Can Canada
Canadian Neuroendocrine Tumour Society
Canadian Psoriasis Network
Canadian Skin Patient Alliance
CML Canada
CONECTed
GIST Sarcoma Life Raft Group
The Leukemia & Lymphoma Society of Canada
Life Saving Therapies Network
Lymphoma Canada
Lung Cancer Canada
Myeloma Canada
Quebec Cancer Coalition
Save Your Skin Foundation

 

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17 BC Municipalities Proclaim May Melanoma Awareness Month

As May marks both Melanoma Awareness Month and the beginning of summer weather, it is imperative that communities across Canada be reminded of the importance of sun safety at this time of year. The COVID-19 pandemic has forced many Canadians to stay home, but that doesn’t mean they aren’t spending time outside. In fact, many have more time than usual to enjoy the outdoors, making sun safety education as relevant as ever.

“COVID-19 has highlighted everyone’s willingness to take drastic measures to preserve our health,” says Kathy Barnard, stage 4 melanoma survivor and Founder of Save Your Skin Foundation (SYSF). “Increased preventative efforts and methods of early detection, particularly in the form of public education, public policy and built environments are also needed to reduce skin cancer rates.”

Skin Cancer in Canada is still on the rise

COVID-19 isn’t the only disease whose rates can be drastically reduced through education and preventative measures. Skin cancer rates in Canada continue to rise, including melanoma, and non-melanoma skin cancers, despite being 90% preventable.

Skin cancer is the most common of all cancers. There are more new cases of skin cancer each year than the number of breast, prostate, lung and colon cancers COMBINED[1]. While most forms of non-melanoma skin cancer can be surgically removed, melanoma is an aggressive form of cancer. The five-year relative survival rate of melanoma that has metastasized is just 18%.[2]

Despite these figures, many people seek sun without taking the recommended precautionary measures, or believe that only severe burns contribute to one’s risk of skin cancer. In fact, any darkening of the skin, including a tan, is indicative of UV damage.

 

Municipal Proclamations

To increase the reach of SYSF’s awareness campaign this year, a new proclamation initiative invited BC municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations.  SYSF is pleased to announce that seventeen BC municipalities, listed below, have accepted SYSF’s invitation to proclaim the month of May 2020 ‘Melanoma Awareness Month’.  Click here to read our full press release.

City of Vancouver

City of Kelowna

City of Victoria

Town of Comox

City of Burnaby 

District of Saanich

City of Richmond

District of Central Saanich

City of New Westminster

City of Prince George

City of Surrey

City of Williams Lake

City of Whistler

District of Mission

City of Nanaimo

City of Langford

City of Campbell River 

 

Mayor of New Westminster, Jonathan Coté, was first to commit to proclaiming May 2020 as Melanoma Awareness Month, and decided to challenge other BC municipalities to follow his example. “Skin cancer is largely preventable, and yet there are more cases now than ever,” said Coté.  “This is why as Mayor of New Westminster, I’m happy to support this important initiative and challenge all BC municipalities to do the same.”

“This is an important initiative, especially for hot, sunny communities like ours,” said Mayor of Kelowna, Colin Basran. “Skin cancer is a serious public health concern, and incidences of the disease are only increasing.”

 

During Melanoma Awareness Month, we invite you to take action by publicly announcing your support of the fight against melanoma.

 

Throughout the month of May, SYSF will be engaged in several initiatives to bring awareness to melanoma, non-melanoma skin cancers, and ocular melanoma. The month will be starting out with a bang thanks to a new drawing contest aimed at youth. The contest’s theme “This is what sun safety looks like”, will encourage participants to submit drawings depicting actions or environments which help prevent skin cancer. The winning entry will be determined through open voting once the May 15th deadline for submission has passed, with a $100 gift card going to the artist with the most votes.

 

Download our custom banner photo for your Facebook cover photo below, or upload a selfie below to participate in our #WeWillDefeatMelanoma campaign! We will apply our campaign frame to your selfie and post it on our social media channels.

 

 

 

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Connecting Ocular Melanoma Patients across Canada

Ocumel Canada has opened up a private Facebook group, Ocular Melanoma Connect, to connect Canadian OM patients and caregivers. We are few in number, very spread out and often feel very alone. Together we will have a stronger voice. This group gives us an opportunity to connect with others, share experiences, imagine and advocate for better care and more services. Please consider joining us.

There is no intent to replace the many other international groups that we all belong to. The group also provides an opportunity to learn about what is happening in Canada to improve OM care. We look forward to meeting you! Welcome to this new meeting place!

We have also developed a contact card in electronic and printed form, intended for distribution at Ophthalmologist and Ocular Oncologist offices and clinics for patients and caregivers to see how to reach us.  Please click on the image below to download the pdf or email us to order the print version – ocumelcanada@saveyourskin.ca

You can also visit the pages we have created the following pages to provide up-to-date links and resources:

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

View our February 2019 Webinar: Ocular Melanoma – Innovative Treatments and Beyond. Click here to view the recording, or watch it on our YouTube channel HERE

We hope that information and support will flow in two directions. If you find what you were looking for, or even if you don’t, please engage with us so we know how to constantly improve our efforts. Feel completely free to be in contact by email at ocumelcanada@saveyourskin.ca or by phone at 1-800-460-5832.

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‘A Viking’s Challenge’ Completed

Hip hip hooray! Chris Isfeld and Shawn Bjornsson successfully completed their race: ‘A Viking’s Challenge’! The 30km race across frozen Lake Winnipeg took place on Saturday March 7, 2020.

Chris and Shawn’s adventure began when Chris was still in treatment for melanoma. He had started running again to overcome both the physical and emotional challenges he was experiencing and, one day, saw a photo of his childhood friend Shawn Bjornsson. Shawn had just finished a race in -40°C weather. His cheeks were red and his moustache covered with frost. Chris had a sudden inspiration! He decided to challenge Shawn to race across Lake Winnipeg, Canada’s sixth-largest lake. True to their viking roots, they did not back down from the challenge. They began planning, training and fundraising.

The race, which began in Grand Beach and ended in Gimli, took place during the Gimli Ice Festival and attracted a large crowd of people who welcomed the pair at the finish line with cheers of encouragement.

“The weather was ideal, but the running conditions weren’t,” said Chris, recounting how he felt during the race. “There were large drifts of snow across the trail which made the running very hard going. It felt like we were running on sand.”

“But as soon as I saw the crowd gathered at the finish line, I forgot how hard the race had been. I felt an amazing new surge of energy.”

Chris’ story is an exceptional example of human resilience and courage. And like in many stories of melanoma survivorship, Chris had an ally by his side to support him along the way. Shawn Bjornsson has been an outstanding supporter, literally running beside Chris each step of the way on this recent challenge.

“There were times during the run when I thought we wouldn’t make it. Shawn’s encouragement was crucial,” recounted Chris.

Having completed this heroic challenge, Chris Isfeld plans to take some time to rest and spend time with his family.

“To be honest, it hasn’t really sunk in yet that it’s over. I feel so exhilarated! This was the hardest run I’ve ever done, and to be hearing stories of how it’s inspiring others to give back too is just an amazing feeling,” he said.

As of this writing, Chris has raised almost $20,000! The funds raised will go to Save Your Skin Foundation and the patients we help. You can still donate to Chris’ fundraising page here.

        

 

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Rare Disease Day is February 29th

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. February 29, 2020 will be the 13th international Rare Disease Day. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

What is a Rare Disease?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world.

1 in 12 Canadians is living with a rare disease.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

People living with a rare rare disease need equitable access to diagnosis, treatment and care.

 

 

There are several types of rare and dangerous skin cancer. Click on each below to learn more:

 

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Events in Canada

Join five national rare disease organizations at an interactive exhibit to bring visibility to the many ways that living with a rare disease can impact the lives of everyday Canadians.

When: Fri, February, 28th, 8am – 6pm

Where: Sam Pollock Square, within Brookfield Place.

What: This exhibit will highlight the experiences of a number of patients from across the country. Public, patients, caregivers, and policymakers are welcome to explore, interact, and share what makes YOU rare.

The event will be hosted by radio personality and broadcaster Josie Dye, who shares a special connection to Canada’s rare disease community.

For us, our partners, and the approximately 1 in 12 Canadians living with a rare disease, every day is Rare Disease Day.

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Cancelled: Join Team Save Your Skin at the BMO Vancouver International Marathon

CANCELLED

The 2020 BMO Vancouver Marathon has been cancelled due to increased COVID-19 concerns and the recent directive from the British Columbia Provincial Health Officer to ban all public gatherings that exceed 250 people.

For more information about the cancellation and how BMO Vancouver International Marathon plans to proceed, please visit: http://bmovanmarathon.ca/covid?fbclid=IwAR0rppmet7rhZK78NtSPVB-Bz4oikxm5dAnfYxla4jwNgYc2sBa4_X3m0Jk

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This May 3rd, Team Save Your Skin will be running in the BMO Vancouver International Marathon.

Join Rosemary Westie, champion of Save Your Skin Foundation, and other team members in proudly donning the Team Save Your Skin jersey. Our colours and logo have become a symbol of hope for those fighting melanoma. Let’s make our presence known!

Join the team! 

 

The BMO Marathon offers several race lengths:

  • Marathon (42.2 km)
  • Half Marathon (21.1 km)
  • 8 km
  • Relay (Runner A – 12 km, Runner B – 12 km, Runner C – 5 km, Runner D – 13 km)

 

Don’t want to run but still want to support Team Save Your Skin? Wear our jersey while volunteering at the Marathon!

Learn more about the BMO Vancouver International Marathon here.

Rosemary’s  Story

My sister Kath was diagnosed with late stage melanoma back in 2003. Needless to say, it was shattering.  We were petrified that we would lose her, but miracles do happen, and although it has been an uphill battle she is still with us today.  Kath has always been an amazing person, very thoughtful, giving and strong, both mentally and physically.  It is these qualities that have kept her going through her battle with melanoma, and these same qualities that she now calls upon to help anyone else struggling with this form of cancer through the organization we founded together, Save Your Skin Foundation.

Every time I challenge myself to run for melanoma patients, I am humbled by people dealing with real challenges, challenges they did not choose.  So friends, at this time I am reaching out to ask you to join me in running to help spread awareness of melanoma and non-melanoma skin cancers so that the ones you love never have to experience what Kath and our family went through.

For more information on joining Team Save Your Skin at the BMO Marathon, please contact Rosemary Westie at rwestie@shaw.ca.

Sign up now!

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