Francais
info@saveyourskin.ca

News

Ocular Melanoma Patient & Caregiver Symposium

Thank you so much to all who attended the FIRST Canadian Ocular Melanoma Patient & Caregiver Symposium!

If you weren’t able to join us live over the weekend, you can watch the recording of the symposium on our Youtube channel.

Date: 
April 15 & 16, 2023

Start Time:
Day 1 – Starts: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

The Symposium is brought to you by Ocumel Canada & will consist of 4 key presenters. This symposium will go over 7 virtual sessions over 2 days and will provide up-todate information on primary and metastatic disease, treatment options, testing, and the psychosocial experience of patients. Patients living with primary and metastatic ocular melanoma will also share their experiences.

Can’t attend that weekend? Register anyway and the recordings will be sent to you as soon as they are available.

Our Key Presenters:

  • Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre
  • Dr. Hatem Krema, Director, Ocular Oncology, Princess Margaret Cancer Centre/UHN
  • Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program
  • Monica Tan, Social Worker, Telus Health/ Private Practice

PROGRAM & ADDITIONAL INFORMATION

Program

Start: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

  • Welcome – Nigel Deacon and Kathy Barnard (15 min)
  • Session 1 – Patient Story – Sherry Agriesti (20 min)
  • Session 2 – Presentation: Primary disease – Dr. Weis (45 min)
  • Break (5 min)
  • Session 3 – Patient Story – Mark Jennings (20 min)
    Dr. Krema – Presentation on the value of testing for patients and physicians in making treatment decisions (45 min) followed by a 15 min Q&A
    Castle (Dr. Alsina) and Impact Genetics (Jamie Jessens) –  Presentation on testing (value and availability) and discussion around testing tools – (30 min)

End: 3pm EST | 12pm PST | 1pm MST | 4:30pm NST | 4pm AST

DAY 2

Start: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

  • Welcome – Nigel Deacon and Kathy Barnard (5 min)
  • Session 1 – Patient Story – Candyce Charles (20 min)
  • Session 2 – Presentation on metastatic disease – Dr. Butler (45 min)
  • Break (5 min)
  • Session 3 – Presentation: Psychosocial Experience of the Patient (30 min) followed by a question period (20 mins)
  • Session 4 – Discussion: What Patients and Caregivers Need from Ocumel Canada Moving Forward – What Needs are Not Being Addressed – Nigel Deacon and Kathy Barnard (30 min)
  • Closing – Nigel Deacon and Kathy Barnard (5 min)

End: 3pm EST | 12pm PST | 1pm MST | 4:30pm NST | 4pm AST

Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular melanoma (OM). Ocumel Canada is in close collaboration with a global Medical Advisory Board and partner patient representation organizations with the endeavour to build on international best practices to improve patient outcomes for Canadians touched by this disease.

This rare cancer is a challenge in so many ways. The small number of diagnoses in Canada does make it difficult for the mainstream Cancer Agencies to provide adequate services. In some provinces and territories, there are no services at all.

Click here to learn more

Read more

A Viking’s Challenge 2023 Recap

A Viking’s Challenge 4th Edition was March 4 & 5 and we couldn’t be happier with how the event unfolded.

In total, 36 people participated, running a combined total of 737 km, or the equivalent of 24.5 crossings of Lake Winnipeg. For the first time since the pandemic, Chris was able to be back on the lake with his friend Shawn in Gimli, MB this year, despite the ongoing treatments and side-effects that come with fighting a dangerous cancer.

We thank everyone who contributed to A Viking’s Challenge 2023. Your actions have made a powerful statement of support for Chris and fellow melanoma patients across CanadaTogether, we raised nearly $9,000 this year. Since its inception in 2020, the event has raised $50,000 to help assist patients reach the life- treatment they need.


The Weekend in Pictures

From top left: Chris Isfeld, Shawn Bjornsson and friends, Lisa Boldt, Rosemary Westie and friends, Joan Denroche, Rosemary Westie and family, Chris Isfeld, Shawn Bjornsson and friends, Jessica Drakul.

Thank You to our Sponsors!

Many thanks to the businesses who generously sponsored “A Viking’s Challenge” this year:

  • Bristol Myers Squibb
  • Ship and Plough Tavern
  • Pfizer
  • Merck Canada
  • Sanofi

Read more

Dr. Smylie Receives the CMC Legacy Award

Dr. Michael Smylie was the recipient of the 2023 Canadian Melanoma Conference Legacy Award which was presented on February 26, 2023. Kathy Barnard, Save Your Skin Foundation’s founder and former patient of Dr. Smylie, had the honour of saying a few words about this incredible doctor, friend, athlete and father. She read several testimonials from former patients and caregivers, including the following one from her very own sister, Rosemary Westie:

“To Mike,

When you love someone who’s diagnosed with cancer, the world as you know it comes to an end. When my big sister and best friend was diagnosed I was petrified. I couldn’t imagine a life without her in it, none of our family could. But sadly, as a family, you can only do so much. You can provide love, support, and hope, but at the end of the day, you’re still petrified, because love, support and hope can’t cure this relentless disease.

In the early years through the various treatments and surgeries my sister had, we always feared we were on borrowed time. Although she stayed strong and dealt with everything this disease threw at her, there came the day we dreaded, where we were told there was nothing they could do. The panic and fear that set in at that stage was indescribable, I simply could not breathe. But then, when we were at our most desperate, we were granted a miracle.  And that miracle was you, Mike Smylie.

I know now, years later, that you are simply a lovely and humble man. You’re a wonderful dad and a friend to many. You are a tremendous athlete, and a connoisseur of excellent rum. In fact, as far as I’m concerned, your only flaw is that you are an Edmonton Oilers fan🤣.

But can I tell you, Mike, that when we first met under such dire circumstances, to me, my sister and our entire family, you were this divine, all-powerful, god like, super being, that had my sisters life in your hands. I wonder if you realized that you controlled the fate of our family. Our future, our happiness, whether she would live or die.
I think about that now, and what a huge burden that was to place on your shoulders, and to think that you didn’t just carry that burden for her, but for every single one of your patients.
I hope we weren’t asking too much of you Mike, but we needed you, desperately. You brought calm to our panic, you brought hope when we felt hopeless. You helped us understand what was happening, and what to expect throughout the treatment, which was invaluable when we were in the eye of the storm.  You always made us feel like she was your only patient and your biggest priority, and we know you did the same for everyone single one of your patients. 🙂

You, my dear, just have to accept that you will always be our super hero. Not the one wearing the cape, but the one wearing the wings, and of course the tight bike shorts. 🤣Thank you Mike, for saving my sisters life.

Kath’s sister Rose”

Dr. Michael Smylie has been a good friend of the Foundation since its creation. He sits on our Medical Advisory Committee and has been a frequent presenter on our webinars, including our most recent Post-CMC 2023 Update webinar. Dr. Michael Smylie is a medical oncologist at the Cross Cancer Institute, and professor at the Department of Oncology at the University of Alberta in Edmonton.

Congratulations Dr. Smylie!

Read more

A Viking’s Challenge 2023 is this weekend!

Want to participate?  It’s not too late!

Event Details

When: The weekend of March 4 – 5, 2023
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. Running shirts and other merchandise are also available for purchase in our Etsy store!

A few words from the Founder of A Viking’s Challenge

“Hi everyone, Chris Isfeld here. This year has been challenging, with plenty of bumps along the way. In July 2022, I got accepted into a promising trial run by a leading melanoma oncologist out of Princess Margaret’s Cancer Clinical Research Unit in Toronto.

The trial required participants to have two or more active tumours so one could be surgically harvested and sent to a lab in the U.S. where they rapidly reproduce tumour-infiltrating lymphocytes (TIL). The surgery was challenging due to previous radiation treatments. Unfortunately, the trial was unsuccessful and the lab was unable to produce the cancer-fighting lymphocytes.

I want everyone to know that my spirits are still high and I’m far from throwing in the towel. I’ll be participating in a 4th edition of A Viking’s Challenge this March 4th on Lake Winnipeg and challenge everyone else to lace up and get active to support the Save Your Skin Foundation. I plan on being in Gimli for the weekend, but you can participate anywhere and in any way. I haven’t run since before my surgery and have no idea what I am capable of with my surgery-related hernia, but I promise to give it my all!

To register or make a donation, click here. Thank you!”

 

Click here to listen to Chris Talk about A Viking’s Challenge on CBC Manitoba

 

Read more

Skin of Colour: Skin Cancer Image Sources

There is a distinct lack of racial diversity in medical images of skin conditions.

To address this gap, we have been working with a medical student to help collate resources that depict skin cancer, and other skin conditions, in people of colour.

We are very pleased to finally have the resource complete and ready to share with you. Click the button or click on the image below to expand.

Prepared By: Rebecca Lena MD (C)

University of Toronto Faculty of Medicine

Version: 01/03/23

The following citation is recommended: Lena, Rebecca. Skin of Colour Skin Cancer Image Sources. Save Your Skin Foundation. January 2023, https://saveyourskin.ca/wp-content/uploads/Skin-of-Color-Skin-Cancer-Image-Sources.pdf. [Day Month Year of access].

Read more

Get ready for A Viking’s Challenge 4th 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. 

Last year, life threw 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.

Finally, this year, Chris is aiming to be back on the lake with his friend Shawn, despite the ongoing treatments and side-effects that come with fighting a dangerous cancer. Chris is again showing amazing fearlessness and grit by challenging himself both physically and mentally. By joining A Viking’s Challenge 2023 and pledging to run or walk, you 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. If you’d like a special ‘A Viking’s Challenge’ t-shirt or other merchandise, please visit our Etsy store to make a purchase. Make sure to place your order soon if you want your t-shirt in time for the event!

To learn more about Chris’s story and the inaugural event, click here.

A Message from Chris

When a successful treatment suddenly stops working, you can’t help but panic, especially when the only other options are clinical trials or major surgeries.

This year has been challenging, with plenty of bumps along the way. In July 2022, I got accepted into a promising trial run by a leading melanoma oncologist out of Princess Margaret’s Cancer Clinical Research Unit in Toronto. The trial required participants to have two or more active tumours so one could be surgically harvested and sent to a lab in the U.S. where they rapidly reproduce tumour-infiltrating lymphocytes (TIL). The surgery was challenging due to previous radiation treatments. Unfortunately, the trial was unsuccessful and the lab was unable to produce the cancer-fighting lymphocytes.

I want everyone to know that my spirits are still high and I’m far from throwing in the towel. I’ll be participating in a 4th edition of A Viking’s Challenge this March 4th on Lake Winnipeg and challenge everyone else to lace up and get active to support the Save Your Skin Foundation. I plan on being in Gimli for the weekend, but you can participate anywhere and in any way. I haven’t run since before my surgery and have no idea what I am capable of with my surgery-related hernia, but I promise to give it my all!

Event Details

When: March 4-5, 2023
Where: Anywhere in Canada. Chris and Shawn 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. 

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!

 

 

 

Read more

Webinar – Post-CMC 2023 Update from Dr. Smylie

Date/Time:  March 1 – 5pm-6:30 pm PT / 8pm-9:30 pm ET

Presented by Dr. Michael Smylie, Cross Cancer Institute, Edmonton, this webinar will review breaking news, key takeaways, clinical data and other updates presented at the Canadian Melanoma Conference (CMC) taking place in Banff, Alberta, from February 23-25, 2023. Dr. Smylie will present on key clinical trial data from 2022 in the management of melanoma, the latest strategies in melanoma as they pertain to medical oncology, pathology, radiation and surgery, and implementation approaches that maximize patient standard of care in melanoma. Dr. Michael Smylie is a medical oncologist at the Cross Cancer Institute, and a professor at the Department of Oncology at the University of Alberta in Edmonton

View Webinar Recording (English) Here

Presenters:

  • Kathy Barnard, President, SYSF, melanoma stage 4 survivor
  • Dr. Michael Smylie, Medical Oncologist, Cross Cancer Institute, Professor, Department of Oncology, University of Alberta, Edmonton

More on CMC

This conference brings together medical oncologists, surgeons, dermatologists, radiotherapists, pathologists, molecular biologists, immunologists, and other allied health professionals interested in the treatment of melanoma worldwide.

  1. Describe key clinical trial data from 2022 in the management of melanoma and understand the impact on Canadian practices.
  2. Understand the latest strategies in melanoma as they pertain to medical oncology, pathology, radiation, and surgery.
  3. Implement approaches that maximize patient standard of care in melanoma.
Read more

Hockey Fights Cancer Focuses on Save Your Skin Foundation This Year

Save Your Skin Foundation has been chosen to receive special focus during the Vancouver Canucks’s Hockey Fights Cancer Night!

 

This year’s Hockey Fights Cancer game will have a special focus and holds important meaning to a member of the Canucks family. In 2020, Natalie Miller’s mother, Janet, passed away from metastatic melanoma. Since her diagnosis, J.T. and Natalie have supported Save Your Skin Foundation. The Vancouver Canucks announced this morning that a $20,000 donation will be made to Save Your Skin Foundation on behalf of the Canucks for Kids Fund.

 

If you’d like to join us on Sat, Dec. 3rd at Rogers Arena, you can purchase your tickets using the following link and SYSF will get $10 from every ticket sold: https://offer.fevo.com/arizona-coyotes-ebylfkn-46c643. We will have a booth in section 111 so if you come to the game, make sure to come say hi! A video featuring SYSF founder Kathy Barnard will play during the game and our booth will be features as well.

 

On top of all this, the purple jerseys worn by the players during their warm-up session will be auctioned off with proceeds coming to SYSF. We are truly honoured by the generosity shown by the Vancouver Canucks and the J.T. Miller family, and by this wonderful opportunity to bring greater awareness to melanoma.

 

Read more

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.

Watch the recording 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
Read more

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 

Read more