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melanoma patient support

Webinar: Diagnosed with Skin Cancer? Here’s What To Do Next

View the recording of our webinar ~ February 24, 2022

An Hour with Kathy Barnard

In this webinar, Kathy Barnard, founder of SYSF and melanoma survivor, shares her experience navigating and advocating through the Canadian health care system, which is complicated and can be confusing to many. She helps patients and caregivers understand how to get from diagnosis to surgical and/or systemic treatment of melanoma or non-melanoma skin cancer (NMSC) such as metastatic basal cell carcinoma (BCC), squamous cell carcinoma (SCC) or merkel cell carcinoma (MCC).

Click HERE to view the recording!

And click HERE to download/print a list of Questions you can ask your Doctor

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Get ready for A Viking’s Challenge 3rd Edition!

In March of 2020, Chris Isfeld and his childhood friend Shawn Bjornsson completed a massive challenge. Three years after Chris was diagnosed with late stage melanoma and recovered from being partially paralyzed from the waist down, they ran 30km across frozen Lake Winnipeg and raised almost $20,000 for melanoma patients. 

One year later, they were facing a different kind of Viking’s challenge: a global pandemic that kept Chris from returning to Gimli to run on the lake with Shawn. But that didn’t stop them from getting people all over Canada to join them in running and to raise funds and awareness wherever they were. 

This year, life has thrown Chris yet another curve-ball. A large mass was found on his right adrenal gland, forcing him to stop training to focus on his treatment. Though Chris is hopeful that the immunotherapy treatment that saved his life in 2017 will help him overcome this latest challenge, he needs our support!

Let’s show Chris he is not alone on this journey by joining A Viking’s Challenge 2022 and pledging to run or walk! By channeling our inner Vikings, we will make a powerful statement of support for Chris and fellow melanoma patients across Canada.

All registrants will receive a charitable donation tax receipt and those who want one will receive a beautiful AVC medal. To learn more about Chris’s story and the inaugural event, click here.

 

Event Details

When: March 3 – 6, 2022
Where: Again this year, because of the pandemic, the event will take place virtually, allowing participants to run any distance they choose from any location in Canada and beyond.
How: To participate, you must first register here and pledge to run a certain number of kilometres. We will keep a running tally of the number of kilometres pledged and see how many times we can “cross” Lake Winnipeg.

Each participant will have the option to get a free medal to commemorate their participation. Special t-shirts and other merchandise are also available for purchase in our Etsy store!

As always, every dollar raised through this event will go directly to assisting melanoma, non melanoma skin cancer and ocular melanoma patients meet their everyday needs during treatment in the form of transportation, accommodation, child care and more.

So what are you waiting for? Register now and start training to channel your inner Viking!

 

 

 

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SYSF Holiday Party 2021

You’re Invited!

Sunday, December 19th at 5pm PT / 8pm ET

 

This party will be hosted in our custom Topia virtual world, with lots of festive activities and surprises. This party is for all patients, family members and friends of the Foundation.

Come in your most festive apparel with your favourite holiday beverage!

Instructions for how to join the party

On Dec 19th, click here to start the party: 

https://topia.io/save-your-skin-foundation

What you’ll need:

  • A computer or a tablet – You’ll need a Windows or Mac desktop or laptop computer equipped with a camera, or a Android Tablet or Ipad.
  • For the best experience on Android tablets please use “desktop mode” in Chrome.
  • A supported web browser – Topia works best on Google Chrome, Edge, and Brave on desktop and laptop computers. For best results we recommend using one of these three browsers.
  • Headphones/ear buds – There is ambient sound in Topia which is personal to you. Headphones ensure a great experience. Without headphones, higher volume can result in feedback for other guests or mixed sounds which isn’t fun for anyone.

How to join:

  • On December 19 at 5pm PT | 8pm ET, click on this link to join: https://topia.io/save-your-skin-foundation. Don’t bother trying to go on beforehand as it will not be available.
  • When you first go in, you will be asked to choose a display name.
  • Your browser will ask for permission to use your camera and audio. If you have Zoom/Teams/Skype open you won’t be able to do this, so please make sure they’re closed first.

What to do once you’re in:

  • You can move around the space using either mouse clicks or your arrow cursor buttons.
  • You hear and see people better the closer you are to their little “Topi,” or person.
  • If you walk away from people you hear and see them less. People “fade out” as they get farther away.
  • As you explore, notice when your cursor turns into a pointer. This indicates that the object your mouse is on has a function. Click to interact with the object.

See you there!!

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Continuing Ocular Melanoma Awareness all year round

November is Ocular Melanoma Awareness month – and it is the time of year we at Ocumel Canada bring awareness to the importance of dilated eye exams for the detection of ocular melanoma.

We will take this opportunity though, to continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Sheila and Leanne’s stories:

 

 

 

 

 

 

 

 

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists! Please click here to learn more about them and how they have supported the #EyeGetDilated campaign this year:

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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With Thanks to All Move for Melanoma 2021 Participants, Donors, and Sponsors

A tremendous THANK YOU to all of our incredibly dedicated participants and generous donors!

95 participants and 29 teams across Canada took part in Move for Melanoma this year! We have been so moved and inspired by this incredible community of patients, families, and friends.

When we set the ambitious goal of raising $75,000 this year, we thought we might be aiming a little high. But clearly, we were right to dream big because, with your help, we ended up surpassing our goal!

To wrap up this monumental weekend, we’ve created the Recap Video below. We hope you will take a few moments to watch it as we pay tribute to our incredible participants, donors and sponsors across Canada.

 

We’d also like to highlight the five fundraising teams that raised the most.

Team Miller
Vancouver Canucks’ JT Miller and his wife Natalie fundraised in memory of Natalie’s mother who passed from melanoma last year.  We can’t thank them enough for their support over the last year. Check out the Team Miller page here.

Team Mela-No-More 
Based in Port Moody, BC, Team Captain Stefanie Lynch and her teammates organized a run/walk at Inlet Park and raised almost $11,000! Stefanie’s mother is currently fighting Stage 4 malignant melanoma. Check out her team page here.

Team The Eyes Have It
Based in Victoria, BC, Team Captain Nigel Deacon ran a marathon distance to inspire others to donate to this worthy cause. All together, his team raised an amazing $7,300 for ocular melanoma patients. Nigel was diagnosed with advanced ocular melanoma 10 years ago and now advocates for ocular melanoma patients across Canada.
Check out his team page here.

Team Stringer
Nicole and Michael Stringer hosted a virtual 3km or 5km run/walk in Red Deer Alberta and raised just under $5,000. Michael is currently fighting Stage 4 Melanoma. A heartfelt thank you to the Stringer Family. Check out their team page here.

The Laurence B. “For Life” Team
The Campbell River team, led by Laurence’s mother, Michelle, threw axes for 6 hours and raised almost $4,000. Amazing work everyone! Laurence is currently fighting ocular melanoma. Check out their team page here.

Move for Melanoma Sponsors

Finally, we’d like to acknowledge the many businesses that stepped up to support our event this year. Please show them your support!

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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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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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