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patient stories

Webinar – Living with Cancer: Survivorship & Mental Wellness

Date/Time:  November 23, 2022 – 5pm-6:30 pm PT / 8pm-9:30 pm ET

This webinar will focus on the experience of cancer survivors and the importance of mental wellness from the perspective of four women with unique backgrounds and experiences in the cancer space. Shannon Gaudette, a melanoma stage 4 survivor, will talk about her physical and emotional wellbeing throughout her cancer experience. She will be followed by Antonella Scali, Executive Director of the Canadian Psoriasis Network and the daughter of a cancer survivor, who will talk about the results of a survey completed by All.Can Canada and implications for mental health and the need for psychosocial supports. Then, Kathy Barnard, president of the Save Your Skin Foundation and a melanoma stage 4 survivor, will talk about her experience as a long-time survivor. Finally, Lyanne Westie, SYSF wellness support consultant, will present on the importance of mental wellness in all aspects of life. These short presentations will be followed by a discussion between the four presenters, with time for questions from webinar attendees.

Register here

Presenters:

  • Kathy Barnard, President, SYSF, melanoma stage 4 survivor
  • Antonella Scali, MSW RSW, Executive Director, Canadian Psoriasis Network
  • Shannon Gaudette, melanoma stage 4 survivor
  • Lyanne Westie, SYSF wellness support consultant
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November is Ocular Melanoma Awareness Month

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

Through our work, we will 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 Brianne’s story below:

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists!

 

 

 

 

 

 

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

OcumelCanada.ca

About Ocular Melanoma

Helpful Links

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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Check out our national and international Melanoma Awareness Month initiatives!

May is Melanoma and Skin Cancer Awareness Month

This May, Save Your Skin Foundation and Ocumel Canada are running local, national and international campaigns to raise awareness on the importance of prevention and early detection of skin cancers. See a full list of our Melanoma Skin Cancer Month and Ocular Melanoma awareness initiatives HERE.

For the third year in a row, Save your Skin Foundation’s proclamation initiative has invited Canadian municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations. Over 38 municipalities across 8 provinces have issued signed Proclamations to proclaim the month of May 2022 ‘Melanoma and Skin Cancer Awareness Month’.  Look for your city on the list here

Members of our SYSF team have also had the honour to present to the Mayors and Councils of a dozen municipalities across the country to share their experiences as patients and spread the message of sun safety and early detection of skin cancer.

Skin check awareness

Save Your Skin Foundation is part of the Global Melanoma Coalition, a group of 43 organizations from 28 different countries bringing the patient voice to the melanoma space. The below videos have been created in collaboration with the Global Coalition.

It’s funny what you can miss when you’re not looking for it. Watch the Global Coalition video and learn the importance of checking your skin for melanoma and skin cancer:

Skin self-exam tutorial

This video covers the ABCD&E warning signs of melanoma and skin cancer, and the seven steps for checking the body. Pauses between the seven steps have been included in the film, so you can simply take your phone or tablet into a bathroom, hit play, and follow the instructions in real time:

 

#EyePatchDay

Having regular eye examinations could save your life! Routine eye tests can lead to early detection of ocular melanoma and many other health issues. However, statistics show that we are not visiting the optometrist as frequently as we should.

Make a commitment to booking an eye exam this month!

Visit OcumelCanada.ca to learn more

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See what we have planned for Melanoma Awareness Month 2022!

This year, Save Your Skin Foundation is running local, national and international campaigns to raise awareness on the importance of prevention and early detection of skin cancers. See a full list of our Melanoma Month initiatives HERE.

 

Press Release

Click here to read the news, April 29, 2022: Save Your Skin Foundation Runs Local, National and International Campaigns to Increase Skin Cancer Awareness During Melanoma Awareness Month

 

A common diagnosis with a rare outcome – Helen’s Story

Almost a decade ago, in 2013, Helen found a spot along her hairline that worried her. Two different doctors told her it was nothing to worry about before a dermatologist recognized it as cancerous and had it removed. And that was that, she was assured. Most skin cancers are easily dealt with and life goes on. But, based on her pathology report, Helen had a feeling that this ordeal was far from over.

It takes a village to stand up to cancer: Helen’s story via Macleans.ca

 

Sty-Lives OPHA Challenge

We have partnered with the Ontario Professional Hairstylist Association (OPHA) to create the Sty-Lives OPHA Challenge, which aims to train 200 hair professionals to detect potential skin cancers by May 31, 2022.

The initiative behind the challenge is Styling Hair & Saving Lives (Sty-Lives). Led by two medical students, with the support of SYSF, it aims to empower and educate hairstylists and barbers to detect suspicious skin lesions on the ears, face and scalp of their clients. Participating salons and barbershops are provided with training materials and resources and are taught how to detect suspicious spots. The purpose of the project is to help facilitate communication between the client and their healthcare provider, leading to earlier detection of potentially dangerous skin cancers.

As of this writing, the Sty-Lives OPHA Challenge has already reached 83% of its recruitment goal.

 

Melanoma Month Apparel

Check out our Melanoma Month Collection of Shirts perfect for the melanoma warrior or supporter in your life. As always, the proceeds from the sale of our SYSF merchandise goes directly towards supporting patients when they need it most. Visit our Etsy Store!

 

Thanks to Giving Hope Gala 2022 Sponsors & Supporters

This year’s pool party-themed gala was a lot of fun. A huge thank you to all who joined us and an even bigger thank you to all our sponsors who donated generously to make this event a success. We’ll have more information on the gala, including lots of pictures, in our next newsletter, so stay tuned!

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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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A Viking’s Challenge 3rd Edition is Here!

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 walking 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 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 A Viking’s Challenge participant medal. To learn more about Chris’s story and previous years’ events, click here.

 

Event Details

When: March 4 – 6, 2022
Where: Anywhere in Canada. Shawn Bjornsson will be running in Gimli, MB, the largest icelandic community outside of Iceland.
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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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 

Read more

Ocumel Canada News!

The Ocumel Canada team has been very busy working on initiatives and strategies to help bring awareness to Ocular Melanoma (OM) and improve care pathways for patients across Canada.  In the spring we conducted a patient/caregiver survey with the intent to gather current information about primary and metastatic OM patient experiences across the country, from diagnosis and genetic testing options, to varying methods of treatment.

We deeply appreciate respondents’ time in filling out this survey, and we have now released a comprehensive report detailing their feedback.

Please click here to view the full report.  This data helps inform our work, and we share it with the treating physicians who handle our cases every day.  We work with treaters and treatment providers to create an ongoing and open dialogue which we believe will serve patients and their families in the most positive way.  We welcome any questions or feedback – please email ocumelcanada@saveyourskin.ca to get in touch!

And in other Ocumel Canada news…

 

We have expanded our participation in the annual SYSF event called “Move for Melanoma” – an activity challenge across Canada to raise funds for melanoma, non-melanoma skin cancer and ocular melanoma patients.  For the last two years OM patients and supporters have created their own teams on the Move for Melanoma platform, and they are welcome to do so again this year! But for those who may be just meeting us for the first time, or who might simply like to support Ocumel Canada with a donation, we have created Team Ocumel Canadaclick here to check it out.

Save Your Skin Foundation is the only organization in Canada that supports skin cancer and ocular melanoma patients financially when they need it most. All the money raised through 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.

To join the movement, our friend Laurence has shared his story and is a spokesperson and feature patient for this event.  Laurence has been fighting a battle with Ocular Melanoma for almost four years. Thanks to our Move For Melanoma fundraisers and donors, Save Your Skin Foundation can continue helping Laurence travel to receive a promising new treatment. Read Laurence’s story HERE.

Download these posters for print, and be ready to  register for Move for Melanoma 2021!

 

 

Please note – these resources are all available in French – email us at marianne@saveyourskin.ca for French.

 

ALSO!  Check out our new Ocumel Canada merchandise

Get your shirt today to help support Team Ocumel Canada and the work we do, supporting OM patients across Canada:

           

 

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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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