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Move for Melanoma After Party

Join the funnest part of MOVE FOR MELANOMA this year by joining our VIRTUAL AFTER PARTY! Celebrate with the Save Your Skin team, donors and fellow participants! Everyone is welcome!

The After Party will take place on Sunday, September 26th, 2021 at 5pm PT | 8pm ET on a platform called Topia. If you attended our virtual Giving Hope Gala in the spring, then you will know that Topia is a fun, new, online chat platform that allows us to connect virtually in a more human way. You’ll easily be able to move in and out of conversations with other attendees like you would in person with the platform’s spatial video, while also exploring a world full of surprises.

In the meantime, click here to share, participate in, and stay up to date on the progress of our 3rd annual Move for Melanoma event!

 

 

 

 

 

 

 

 

 

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 – 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 September 26th 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. 
  • You can mute yourself or others by clicking the speaker icon in the top right corner of your video or theirs. When muted the speaker will turn from black to red.
  • To send a private message to someone at the gala, click on the envelope symbol on their video. If someone sends you a private message, the envelope symbol to the left of your screen will become red. 

 

For complete instructions on how to use Topia and join the party, click here!

 

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Laurence’s Story

Vancouver, BC

It was around 1pm and my partner and I were playing with monkeys on a beach in Thailand. That’s the moment my life changed forever.

Out of nowhere, as if someone had just pulled a curtain down over my right eye, this “black line” fell about a quarter of the way down over top of my vision. It was super strange and I immediately asked my partner if there was something she could see in there, but she said no. Apparently it looked fine. I had an instant thought that, maybe because we had been doing a lot of scuba diving this trip, perhaps a blood vessel or muscle became damaged due to the pressure under water.

A week later, once finally arriving back home, and this black line still very present, I went to a walk-in clinic. And from that first doctor’s visit, it took another 6 or 7 days and 4 more doctor’s appointments before I finally heard the end result. That’s also when I heard the scariest 3 words ever said to me in my life: You Have Cancer.  Ocular Melanoma.

Since I can remember, I’ve always had such an appreciation for the pure natural beauty that this world is, and what it means to be able to reflect on that miracle alone. To be able to see one’s place in this universe, on this planet, in this life… to simply be aware of what it is to be alive.

I could never get enough of it!

Growing up on Vancouver Island surrounded by endless natural beauty, and having the freedom to grow and learn in that space, was a priceless experience in shaping this view and appreciation I had developed early on. It inspired me as an artist, a musician, and kept me curious about expanding my world infinitely. It gave me the inspiration to pursue those dreams and passions and to let Experiences be my guide. When I graduated from high school, I moved to Vancouver with my band to become rock stars and follow the path of the arts.

Since that move 18 years ago, I have witnessed and experienced my dreams manifest and become reality so many times over, in so many different ways.

It was the reason I met the love of my life.

It was also the reason I found martial arts.

Bujinkan Budo Taijutsu, to be precise. The art of the Ninja. It’s an ancient Japanese art, comprised of 9 different martial art schools of the past and refined into one discipline. This art has been studied and passed down through centuries and, through the time of feudal Japan, the Ninja became known as assassins used to take out leaders of war to alter or prevent battles from ever taking place. But once I began to study the true art as passed down through the ages, and separated myself from what I thought I knew from TV and movies, a whole new appreciation and way of experiencing the world was opened to me.

Ninja were in reality farmers, peasants, and simple people not wanting to live under the harsh rule demanded of the time. Their outlook on life was that of Peace, Love, and Compassion for all things. For Life. But, as well, they had a very different view to fighting and conflict.

What mattered was Life and Death, not Winning and Losing. Fighting to win serves only the ego. Fighting to survive something that is intent on taking your life, is necessity. Whatever it takes to wake up in your own bed, or to protect those that are worth your own life, are the only reasons to engage in conflict or battle. Fighting, or preventing a fight to literally survive, is the only reason to ever engage.

I’ve studied this concept for 16+ years, traveled multiple times to Japan to study with my sensei and the Grand Master of the art. I’ve passed the one and only test given in the art, which is for the 5th degree black belt.

The test goes like this: you kneel on the floor in seiza (feet crossed under your butt, back straight, hands on your thighs, relaxed). The Grand Master stands behind you, holding a sword, and whenever he feels ready (meaning 1 second or 10 minutes, any length of time he wants), he will project at you for a split second the most intense feeling of “Death”, and then proceed to strike straight down on top of your head with the sword. Your test is to sense this intense feeling of “Death”, and to roll out of the way avoiding the sword. That is it. You need to know when your life is truly in danger, and then make the right decision. In modern times, a Boken (wooden katana) is used for this test, but originally, it was done using a real katana. Failure to survive was not an option. And yes, I passed my test the first time 😉!

So what do I do now? There is a very clear opponent trying to kill me, its intention is very clear. And I can’t roll out of the way. No matter which way I seem to move, I can’t escape. And I can’t even see my foe to face it eye to eye. In the past 3.5 years fighting, I’ve had 2 major surgeries, 3 separate rounds of radiation, changed my diet and tried immunotherapy, but nothing has worked thus far. Ocular melanoma, once inside the body, is very rare and can be extremely difficult to treat.

But just this April 2021, my life was changed again! I was introduced to Kathy Barnard of Save Your Skin Foundation. I was made aware of the foundation through my doctors at BC Cancer, who said it couldn’t hurt to give her a call.

It was one of the most important phone calls I’ve ever had the pleasure to make. A brand new treatment for ocular melanoma had just become available this year, but was going to require travel once a week from Vancouver to Edmonton. And not just once but for 12 treatments.

That would mean 12 plane tickets, 12 hotel nights, taxi’s to and from the hospital and airports… and unfortunately, I was responsible for all the expenses related to getting to my appointments. That is until I spoke to Kathy.

Save Your Skin Foundation has become my “secret weapon”. Now I have the ability and support to be able to fight back. Not to win this fight, but to ultimately have the best chance to survive.

Kathleen Barnard is a cancer survivor from 2003. In fact she’s a miracle. Not only for having beaten her cancer, but for creating this amazing foundation for people suffering from all forms of melanoma. She and her foundation have been taking care of All of the expenses I mentioned in order to get me where I need to be, and to eliminate the extra stress and pressure from the financial burden this would put on anyone.

It’s one of those scenarios you find yourself giving yourself a pinch every once in a while, just to make sure it’s not a dream. Well, I can tell you from the bottom of my heart that it’s no dream. Just a dream turned into reality!

To everyone at Save Your Skin Foundation, to all the donators and supporters, to anyone helping in the fight against All cancers, I thank you!

 

 

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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 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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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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Global Coalition launches Skin Check App and Video

In response to the Covid pandemic, the Global Coalition for Melanoma Patient Advocacy has launched two skin self-exam tools to encourage individuals to perform skin self-examinations.

In the fight against melanoma skin cancer, early detection and treatment is critical.

Both the voice-activated app and the video are free to use, so we encourage everybody to find just 10 minutes each month and make conducting a skin self-exam part of their regular routine.

 

1. A voice-activated digital assistant ‘Skin Check’ app

 

Available on both Amazon’s Alexa and the Google Assistant platforms, the app guides people through what to look for, and the seven steps for conducting a full-body skin exam.

The assistant finishes by offering to set a recurring monthly reminder for the exam.

Once enabled, users can simply ask Alexa or Google: “Open Skin Check”

 

 

 

2. A skin self-exam video

 

Similar in scope to the app, the video covers the ABCDE warning signs of melanoma, and the seven steps for checking the body.

Pauses between the seven steps have been included in the film, so that the viewer can simply take their phone or tablet into a bathroom, hit play, and follow the instructions in real time.

 

 

About The Global Coalition for Melanoma Patient Advocacy

 

The Global Coalition for Melanoma Patient Advocacy was formed in 2014 by the Melanoma Research Foundation in response to the global need to bring the patient voice to the melanoma space.

The group has grown to include organizations from 27 different countries and is enthusiastically supported by its partners around the world, as well as the global patient, healthcare and pharmaceutical communities. The Coalition meets the vital needs of the worldwide melanoma community through three working groups, which each specialize in a unique area that addresses globally relevant issues for melanoma patients, encompassing:

  • Melanoma Awareness and Patient Resources
  • Patient Advocacy and Access to Treatment
  • Collaboration and Recruitment

 

The Global Coalition for Melanoma Patient Advocacy meets annually and is determined to make the deadliest skin cancer curable through its worldwide partnership. For more information or with questions about the Global Coalition, email global@melanoma.org.

 

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A Viking’s Challenge is Back!

A Viking's Challenge is BackMark your calendars! The second edition of A Viking’s Challenge will be taking place on March 6, 2021. 

Last March, Chris Isfeld ran 30km across frozen Lake Winnipeg and raised almost $20,000 for melanoma patients! Building on last year’s enormous success, Chris invites you to join A Viking’s Challenge this year by running a distance of your choice anywhere in Canada.

Chris’s Story

Chris is a melanoma survivor. His story with cancer began in 2017 when he was diagnosed with advanced melanoma. He 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).

 

A Viking's Challenge is BackTHE CHALLENGE

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

In an 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, they didn’t back down from a challenge. On March 7, 2020, they ran about 30 km from Grand Beach, Manitoba to Gimli, Manitoba, raising almost $20,000 for Save Your Skin Foundation. Read more about last year’s race here.

This Year’s Challenge

Last year’s race was a personal challenge for Chris and his friend Shawn, but since so many expressed an interest in joining the challenge in future years, Chris has decided to open the challenge up to the general public 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. To participate, runners will have to register and make a one-time donation to Save Your Skin Foundation. More details will be coming soon but, in the mean time, lace up those running shoes, put on your helmet and start channeling your inner Viking!

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Happy Holidays from the SYSF Team!

From Save Your Skin Foundation’s Founder and President, Kathy Barnard, here is a message of thanks to all those who supported the Foundation this past year. SYSF’s team is so very grateful to all those who helped us as we continued offering the best support possible to melanoma, non-melanoma skin cancer and ocular melanoma patients and caregivers, despite the unprecedented challenges we faced this year.

Warmest wishes for a happy holiday season and a wonderful New Year. With lots of love.

 

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Sun Safe BC

BC Sun Safety Coalition

Sun Safe BC is a provincial coalition with members involved in sun safety and skin cancer prevention work.  Coordinated and administered by BC Cancer Prevention Program, the coalition works collaboratively to reduce the risk of exposure to UV and its damaging effects. We do this through policy and health protection measures, and by providing health promotion messaging and education to people in BC, with a particular focus on infants, children and youth.

Membership

  • Save Your Skin Foundation
  • Canadian Cancer Society
  • CAREX Canada
  • Vancouver Coastal Health
  • BC Centre for Disease Control
  • UBC Dermatology
  • BC Children’s Hospital
  • BC Cancer
  • Canadian Dermatology Association

 

Action Areas

CAPACITY FOR ACTION – Strengthen capacity among priority population service providers and educators

SUPPORTIVE ENVIRONMENTS – Create and strengthen supportive environments to limit exposure to UV radiation

POLICY & DECISION MAKING – Inform decision making and seek to influence sun safe policies, advancing toward provincial policy creation or amendments when and where possible;

ATTITUDE, KNOWLEDGE & BEHAVIOUR – Influence and improve attitudes, knowledge and behaviour around sun safety and develop individual skills to keep healthy and avoid UV radiation damage.

 

Current and past projects

Online Training for Early Childhood Educators

Developed and currently hosting zoom workshops for early childhood educators as part of their professional development requirements.  Early Childhood Educators can play an important role in protecting children from the sun’s rays. The course covers important information about skin cancer and ultraviolet radiation, sun protection methods and easy and practical ways to build sun safety into daily routines at childcare centres.  We are working to convert the course to an interactive, online platform and are looking to expand course offering to others working directly with children.

Shade Pilot Project

We are working with the City of Vancouver to design and install shade solutions for their high UV exposure childcare facilities.  We are currently building a research plan to measure UV exposure and physical activity levels in centres with and without shade sails installed.

Sunscreen Dispenser Project

Members of the coalition have been working to have sunscreen dispensers installed at select park locations during spring/summer months.  To date, sunscreen dispensers have been installed at New Westminster’s Riverfront Park and two park locations in Kelowna.

 

Reports

Annual report 2019/20

Contact

For more information or to connect, visit the website HERE or email breann.corcoran at bccancer.bc.ca or call 604-838-7808.

 

 

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New Merchandise Just in Time for the Holidays!

 

The holiday season is right around the corner and we know many of you are busy buying gifts for your loved ones.

To bring a little bit of extra cheer to our own holiday season, and to entice you to support melanoma patients while checking off your shopping list, we opened an Etsy store and designed some brand new Save Your Skin merchandise!

Amongst other things, we now have branded hoodies, headbands, t-shirts, bags, masks and, our favorite new item this year, a hilarious Ugly Christmas Sweater!

Whatever you end up buying, rest assured that all proceeds will, as usual, go directly to patients living with melanoma, non-melanoma skin cancer and ocular melanoma to help them with their everyday needs during treatment in the form of transportation, accommodation, child care, lost wages and more.

There’s an item for everyone in the family, and for every budget. For the fitness enthusiast, we have stylish branded Lululemon shirts and tank tops for men and women. For the minimalist, we have classic black tees with a simple logo. And for that friend who loves making others laugh, I think you’ll agree that the Ugly Christmas Sweater will do just that.

 

 

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