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Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed.  Thanks to All for their feedback and support.

Stay tuned for the resulting report. 

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Train Like the Canucks

We are thrilled to be partnering with Vancouver Canucks’ JT Miller and his wife Natalie this year to fundraise during Move for Melanoma.

Train Like the Canucks is a team that can be joined by anyone. People who join the team are challenged to complete a workout designed by JT Miller himself with the help of his trainer, which emulates a typical workout performed by the Vancouver Canucks hockey players.

All who join the team will be entered into a draw to win a signed Vancouver Canucks’ jersey and other prizes.

Funds raised by Train Like the Canucks will go to Save Your Skin Foundation, the only organization in Canada that supports skin cancer patients financially when they need it most, in the form of treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

To learn more about JT Miller and his wife’s connection to Save Your Skin Foundation, watch the short video below.

Join Train Like the Canucks

 

Q&A

 

How can I join team Train Like the Canucks? 

To join, start by clicking here to register. On the registration page, select “Train Like the Canucks” from the list of activities. If you’re a new user, create an account. If you’re a returning participant, login to your existing account. *If you’ve already registered for another team for this year’s event, you will have to join with a different account using a different email address.* There is a $25 registration fee to join the Train Like the Canucks team.

Does it cost money to be part of Train Like the Canucks?

There is a $25 fee to be part of Train Like the Canucks. All proceeds will go directly to supporting skin cancer patients in need. You are also encouraged to make a donation and to invite your friends and family to support the cause. We thank you in advance for your support.

When will I receive the Canucks workout plan?

Once you are registered with Train Like the Canucks, you will receive the  workout plan by email within a couple of weeks. If you don’t receive it within two weeks, please look in your spam folder or contact marianne@saveyourskin.ca.

I tried joining Train Like the Canucks but I got an error message saying I’m already registered. What should I do? 

Unfortunately, you cannot be part of more than one team with the same account. That means that if you’ve already registered for Move for Melanoma this year, you’ll have to create a separate account to join Train Like the Canucks. To do so, you will need to use a different email address. If you don’t have two email addresses and want to join, please email marianne@saveyourskin.ca to make arrangements.

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Move for Melanoma 2021

Move for Melanoma is back!

This year, we’ll be joined by Vancouver Canucks’ JT Miller and his wife Natalie to raise funds for melanoma skin cancer. 

Move for Melanoma is an activity challenge that takes place across Canada. The goal of the event is to bring awareness to melanoma, non-melanoma skin cancer and ocular melanoma, while raising funds to support patients affected with these illnesses when they need it most.

This year, the event will take place on September 25-26th, 2021. As always, participants will be able to choose a physical challenge of their choice to complete on the weekend of the event. Participants will form teams and, together with their friends and family, try to reach their personal fundraising goals.

To facilitate the whole thing, again this year we will be using a custom website that allows people to register, donate, solicit donations, track progress and promote the event all in one place. The website also includes many resources for participants to help them get ready, and a Q&A page for more information.

If you’re interested in joining us, please visit Move for Melanoma 2021 and register now.

 

Save Your Skin Foundation is the only organization in Canada that supports skin cancer patients financially when they need it most. All the money raised through your donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Whether you’re a survivor who wants to bring hope to newly diagnosed patients, the family member or friend of a patient who wants to send a powerful message of solidarity, or a patient who wants to help change the face of cancer for ever, we invite you to take a stand against melanoma and to move with us this September!

Hand in hand, we fight melanoma together!

          

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#InItTogether Campaign – Melanoma Is Personal

We’ve teamed up with Hayley Wickenheiser again this year to bring awareness to those coping with a melanoma diagnosis.  Summer is here, but if you’re not protecting yourself from the sun, the damage can be far-reaching. Melanoma is one of the top 10 cancers diagnosed in Canada and getting a diagnosis can be scary. Arming yourself with the right information you can literally change the course of your melanoma experience.

Ask about your mutation type. Do your research to find out your options. And know you are not alone in this.

Some Patients, Survivors, and Caregivers from the Save Your Skin Foundation family have come together share their story to inspire education and hope.

“I am newly diagnosed with metastatic malignant melanoma, and I plan to survive it.” – SHERI

“My melanoma came back, but I’m not letting fear in.” – BOB

“I was in end-of-life care when my doctor recommended I take part in a clinical trial.” – MIKE

“Learning that my melanoma was BRAF+ was a huge weight off my shoulders. That knowledge shaped my path through the disease.” – COLIN

“Melanoma research literally saved my life. Today I’m surrounded with the support of the melanoma community and I know they have my back.” – NATALIE

Check out this article in Elle magazine, dedicated to Canadians who have their own personal melanoma stories: 

ELLE Canada – Summer is Back ~ Do you know what you need to know about melanoma?

Check out these “Melanoma is Personal” videos on YouTube   And click here to see more clips on the SYSF youTube channel

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SYSF Endorses the Declaration of Personal Health Data Rights in Canada

SYSF is pleased to announce that it has endorsed an important new initiative, aimed at advocating for the personal health data rights of Canadians. Developed by a patient and caregiver-led Data Working Group formed in 2019 from the annual Patients Redefining the Future of Healthcare in Canada Summit, the Declaration of Personal Health Data Rights in Canada is intended to create greater consensus on the fundamental principles associated with personal health data, particularly from the perspective of patient and citizen groups; in order to encourage the health ecosystem to work out how to achieve these principles efficiently and effectively in partnership with industry, policy-makers, other data custodians, and patients.

The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF. Since the Declaration’s launch in June 2021, it has been endorsed by 27 patient groups as well as 9 individual patients and caregivers.

Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.

The Declaration is available in two formats. To read or download the full Declaration, click here. To read the Executive Summary of the Declaration, click here.

 

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SYSF Around the World

“SYSF works hard to bring resources from around the world to give Canadian skin cancer patients the latest information on treatment options and disease management.

This year our May campaigns have gone around the globe – from our long-standing participation in the Global Coalition for Melanoma Patient Advocacy with the Melanoma Research Foundation to the Melanoma International Patient Advocates Coalition with AIM at Melanoma to Ocumel Canada’s partnership with the US, the UK, Ireland and Australia, all the way home to the NCCN Guidelines created in the US but used by our own Health Care Providers in Canada.

We hope you enjoy these resources and welcome questions or feedback any time.”

Natalie Richardson, Managing Director, SYSF

We are very pleased to congratulate the National Comprehensive Cancer Network on the release of a new valuable patient/caregiver resource! Save Your Skin Foundation is proud to have provided endorsement for the Guide and have our Managing Director Natalie featured on the cover!

The new NCCN Guidelines for Patients® on Melanoma provides an extremely comprehensive and informational reference for patients covering melanoma basics, testing, staging, treatment and recurrence. 

Click HERE to view and download the Guidelines

 

In collaboration with the Global Coalition for Melanoma Patient Advocacy, hosted by the Melanoma Research Foundation in the United States, Save Your Skin Foundation participated in the making of this skin check awareness video for Melanoma Awareness Month 2021, featuring melanoma patients and caregivers from across the globe demonstrating that the time it takes to do a skin self-exam is the same as that of drinking a cup of coffee. Check it out:

Need help performing a self skin check? Click here for a video tutorial!

 

Also:

Save Your Skin Foundation is a proud member of MI-PAC, a coalition of organizations across the globe committed to reducing the global melanoma burden through education, advocacy, and collaboration. MIPAC, hosted by AIM at Melanoma in the United States, works to increase awareness and change public perceptions of melanoma, empower melanoma patients to take an active role in their care, and effect change in regulatory policies to optimize treatment and care.

Watch for our upcoming patient stories and continued awareness initiatives right here at home in Canada!  For more information or support please contact us at kathy@saveyourskin.ca / 1.800.460.5832

 

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Adjuvant therapies in melanoma – a guide to navigate treatment options

As part of Melanoma Awareness Month, Save Your Skin Foundation proudly partnered with the Melanoma Network of Canada to create a patient guide on navigating adjuvant therapies for melanoma. Download your copy HERE!

What is Stage III melanoma?

Stage III melanoma has spread to the lymph nodes. Stage III can be divided into 4 categories based on the evolution of the tumour and the extent of the spread to the lymph nodes. These categories are classified as A, B, C and D. These 4 categories are used to determine prognosis and treatment of the melanoma.

What is primary treatment for Stage III melanoma?

Surgery may be recommended once diagnosis is confirmed. The goal of surgery is to remove the cancer and the affected lymph nodes to minimize the risk of the cancer returning.

What is the genetic mutation of the tumour?

The tissue that was removed during surgery will be tested for specific gene mutations. Certain mutations can alter a gene. For example, approximately half of all melanomas have a mutation in the BRAF gene. Identifying associated gene mutations can help determine if additional treatment options such as targeted therapies are recommended.

Once you know the stage of the melanoma, you can discuss next steps of care with your health care professional.  Click here to view the complete guide detailing treatment options and FAQs for your appointment with your Medical Oncologist:

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SYSF Webinar: Post-ASCO 2021 Update

Post-ASCO 2021 Update with Dr. Hamid: Melanoma, Non-Melanoma Skin Cancers, and Ocular Melanoma

Presented by Dr. Omid Hamid, The Angeles Clinic and Research Institute, Los Angeles, California, this webinar  reviews late breaking news, key takeaways, clinical data and other updates presented at the American Society of Clinical Oncology (ASCO) Annual Meeting that took place in a virtual format in June 2021.

Dr. Hamid shares his key insights into what the landscape of melanoma, non-melanoma skin cancers, and ocular melanoma treatment looks like for the near future.  As Director of the Melanoma Center at The Angeles Clinic and Research Institute, Dr. Omid Hamid works to ensure that patients receive access to the most up-to-date therapeutics, based on molecular pathways of melanoma progression. Dr. Hamid is recognized as one of the preeminent Immuno-Oncologists and melanoma specialists in the world.

Click HERE to view the Presentation Recording on our youTube channel

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May is Melanoma and Skin Cancer Awareness Month

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]

Save Your Skin Foundation is Creating a Healthier and More Sun Safe Canada During Melanoma Skin Cancer 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. Save Your Skin Foundation (SYSF) is pleased to announce several initiatives meant to bring greater awareness to the dangerous disease.

CLICK ON THE LINKS BELOW TO CHECK OUT OUR PLANS AND ACTIVITIES TO BRING MELANOMA AWARENESS IN MAY 2021:

 

PRESS RELEASE April 28, 2021: Save Your Skin Foundation Teams up with Vancouver Canucks’ JT Miller to Spread Message of Sun Safety Amid Rising Skin Cancer Rates

Proclamations: Our Canada-wide awareness initiative invites Canadian municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations.
This year, 50 Canadian municipalities to across 10 provinces answered our call to proclaim May 2021 ‘Melanoma and Skin Cancer Awareness Month’.
Look for your city on the full list HERE!

WEBINAR May 13, 2021 – Click here to watch the recording: Skin Cancer A-Z Educational Webinar with Dr. Salopek

Giving Hope Gala April 29, 2021:  Click here to see how our our virtual event fund raiser went!

SYSF’s 15th Anniversary! Click here to view a collection of the Foundation’s highlights, activities, and events from 2006 to 2021

SYSF Public Service Announcements

Team SYSF Merchandise Store

 

DOWNLOAD THE IMAGE BELOW TO USE AS YOUR FACEBOOK AND TWITTER COVER PHOTO FOR THE MONTH OF MAY:

CLICK ON THE IMAGE BELOW TO SEE A LIST OF SUN SAFETY AWARENESS RESOURCES YOU CAN DOWNLOAD OR ORDER:

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Metastatic Melanoma on Canadian Health & Family – with Dr. Marla Shapiro

Watch this video which aired May 10, 2021:

Melanomas on the skin usually start as areas of pigmentation that’s changed or irregular. If they are noticed and picked up early, they can often be removed. But in some cases it turns into something much greater.

In this segment, we will hear from Dr. Marcus Butler from Princess Margaret Cancer Centre, Kathy Barnard from Save Your Skin, and Shannon, who has been living with metastatic melanoma since 2005. They will be telling their stories, and sharing support options for those seeking education on metastatic melanoma.

 

For more information please visit Health and Family Metastatic Melanoma – Health and Family

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