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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!

 

 

 

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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.
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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritising our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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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.

 

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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
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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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Move for Melanoma 2022 – It’s a Wrap

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

74 participants and 20 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.

After the success of last year, we once again set ourselves an ambitious goal of raising $75,000. With your help, we ended up surpassing our goal once again this year!


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 three fundraising teams that raised the most this year.

Team Ocumel Canada

Based in Victoria, BC, Team Captain Nigel Deacon ran a marathon distance to inspire others to donate to this worthy cause. Together with his fellow team members Martin Dawes and Linda Sendall, they raised an incredible $11,760 for ocular melanoma patients.

Check out his team page here.

 


Team Ani’s Keepers

Based in Chilliwack, BC, Ani Davidson and her sisters challenged themselves to complete a combined 10,000 minutes of fitness between them in the month of September – and they crushed that goal, completing 11,820 minutes! Ani is currently undergoing treatment for melanoma.

Check out her team page here.


Team Mela-No-More – In Honour of Laura

Based in Vancouver, BC, Team Mela-No-More raised funds in honour of Laura, whom they lost after a long and courageous fight. Laura was a beautiful and strong woman, wife and mother. The team raised almost $5,370

Check out their team page here.


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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Upcoming Webinar: Prognostic Testing and What It Means to Ocular Melanoma Patients

Join us for a free webinar on Wednesday, September 14 at 5pm PST | 8pm EST.

In this webinar, Katherina Alsina, PhD, Castle BioSciences, Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program, and Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, will help patients understand prognostic testing when diagnosed with Ocular Melanoma. They will also discuss options for HCPs for prognostic testing, what it can mean to patients and how it can affect treatment decisions. The presentations will be followed by a live Q&A session.
Click here to register
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2022 Sunscreen Dispenser Pilot

OUR 2022 SUNSCREEN DISPENSER PILOT HAS BEEN LAUNCHED!

Save Your Skin Foundation partnered with medical student siblings Samuel and Karen Farag, and the municipalities of Summerside, PEI, Riverview, NBNew Westminster, BC, and Brooks, AB – as well as BC Cancer – to launch 10 dispensers in early August 2022.

The dispensers are automatic and touchless, and provide free, Health Canada approved SPF 30 sunscreen for anyone who needs it. The sunscreen is zinc oxide based, free from chemical sunscreen filters, common allergens and toxic ingredients including oxybenzone, avobenzone, retinyl palminate, PEG, parfume, and sodium lauryl sulphate. See image below for more details.

Here are the locations of the dispensers as of August, 2022:

New Westminster, BC

  • Moody Outdoor Pool
  • Hume Outdoor Pool
  • Grimston Park Wading Pool
  • City Parks Works Yard to support City staff working in the outdoors

Summerside, PEI

  • Summerside Turf Field
  • Leger Park
  • Summerside Boardwalk
  • One mobile dispenser to be used for festivals and public events

Riverview, NB

  • Behind the gazebo on the Riverfront Trail

Brooks, AB

  • Duke of Sutherland Park and Splash Pad

Applying sunscreen is part of an overall sun-safe way to enjoy the outdoors. First, limit your time in the direct sunlight, especially between 11 a.m. and 3 p.m., seek shade, cover up by wearing long sleeves and pants and a wide-brimmed hat. Use sunscreen, specifically one labelled broad-spectrum, SPF 30, protect the lips with lip sunscreen or zinc oxide. Apply 20 minutes before sun exposure, and reapply every two hours or after swimming.

Affixed to the Dispensers is a list of the sunscreen ingredients and reference to Health Canada’s approval of the sunscreen, as well as a disclaimer with respect to the use of the Dispenser or the sunscreen contained therein:

THE SUNSCREEN IS BEING USED AT YOUR OWN RISK. None of Save Your Skin Foundation, (participating cities), nor anyone else connected to these organizations, makes any assurances, representations, guarantees or warranties with respect to the use or effectiveness of the sunscreen or dispenser, and any and all use of the sunscreen or dispenser is done at your own risk. By using the sunscreen or the dispenser, you acknowledge and agree that none of Save Your Skin Foundation, (participating cities and organizations to be listed) nor anyone else connected to these organizations are responsible for the results or consequences from any use of the sunscreen or dispenser.

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Move for Melanoma 2022

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 diseases when they need it most.

This year, the event will take place on September 23-25th, 2022. 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 2022 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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