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Move for Melanoma 2023 – It’s a Wrap

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

50 participants and 14 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 reaching our goal once again this year!

Video wrap up

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. You can also view our 2023 PSA with J.T. Miller from the Vancouver Canucks!

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, they raised an incredible $12,777 for ocular melanoma patients.

Check out his team page here.

Scots across the Rockies

Based in Powel River, BC, Team Captain Taylor Tomko created a family donation page in hopes of inspiring others to donate to this worthy cause. Together with her fellow team members, they raised an incredible $9,704 for melanoma patients.

Check out her team page here.

Helen’s Freewheelers’s

Based in Nanaimo, BC, Team Helen’s Freewheelers raised funds in honour of Helen’s courageous battle against metastatic Basal Cell Carcinoma. She’s now undergoing immunotherapy on Vancouver Island and exploring more advanced treatment options and clinical drug trials. The team raised $6,000

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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Sty-Lives Can Save Lives: A Conversation with Iveta Voll

Note: this post was authored by Taylor Tomko, Director of Special Projects at SYSF

This month, we are continuing to recruit hairstylists and barbers for our Sty-Lives initiative! Sty-Lives empowers hairdressers to be able to detect suspicious skin lesions on the ears, face and scalp of their clients, facilitating communication between the client and their healthcare provider and leading to earlier detection of potentially dangerous skin cancers. We were recently reminded of the importance of checking the scalp through our community member, Iveta Voll, who unfortunately lost her husband, Steve, in November 2022 to melanoma that initially manifested on his scalp. Recently, I had a call with Iveta, in which we discussed her and Steve’s experience with melanoma and the importance of programs like Sty-Lives.

In November 2019, Steve discovered a scab-like growth on his scalp that he had not previously noticed due to its location. The spot at this point of discovery was already black and large, about the size of a two-dollar coin. After his dermatologist took a biopsy, the spot came back as melanoma that was too deep to be surgically removed. The melanoma had already moved into his lungs, making it stage 4. Steve was immediately referred to a hospital oncologist, and soon began receiving targeted pill therapy to which he had a dramatically positive response. By his next CT scan three months later, all of Steve’s melanoma lesions had vanished. Unfortunately, this treatment does not have a long duration of response, and it only worked for Steve for 14 months.

Once Steve’s melanoma began to return, he began an immunotherapy treatment, followed by another targeted pill therapy, neither of which had positive results. At this point, it was spring 2022. Steve and Iveta were devastated, as the only option left for Steve was a drug trial, hopefully at Princess Margaret Cancer Centre in Toronto. After about a month or so of excruciating waiting, Steve was enrolled in a phase I drug trial, which began just after Thanksgiving 2022. However, this trial meant that Iveta and Steve would have to relocate from Kitchener to Toronto while Steve received the drug. Travelling in four-day cycles between Kitchener and Toronto was challenging for Steve, who had begun to have difficulties catching his breath and an elevated heart rate. A special CT scan showed that he had developed blood clots in his lungs from the cancer. Soon afterwards, it was discovered that Steve’s melanoma had metastasized from his lungs to his liver and was growing very rapidly.

At this point, Steve was told that he unfortunately could not continue in this trial due to the extremely fast-growingmelanoma in his liver. Feeling like they were now truly out of options, Iveta and Steve returned home and updated their local oncologist. It was now early November 2022. At this appointment, Steve was given the devastating prognosis of weeks to months. At the end of that same week, Steve woke up struggling to breathe and his heart rate was extremely high. Iveta called an ambulance, and Steve was admitted to the hospital with a fever, which was likely related to the liver metastasis. Steve stayed in the hospital for five days, spending much time with Iveta, their son, Aaron, and his immediate family. Little did they know that the prognosis of weeks to months would turn out to be just seven short days later; Steve passed away very suddenly on November 8th, 2022 in the hospital surrounded by his loved ones. He and Iveta had been married for 27 years.

Since Steve’s passing, Iveta has started volunteering and is eager to get involved with melanoma-related causes. She, like many of us who have been touched by cancer, wants to ensure that others don’t go through the same painful experience as them. Because Steve’s melanoma appeared on his scalp, she is especially passionate about the Sty-Lives initiative. “Skin cancer is so preventable, and hairdressers can save lives, there’s no doubt about it,” Iveta says, “people visit a hairdresser more often than they visit their family doctor.” Iveta and I talked about the Sty-Lives program at length, including how hairdressers can take on responsibility by having Sty-Lives training, how they can move past any feelings of awkwardness, and how visitors to hair salons can encourage their stylists to get involved. Importantly, as Iveta and I discussed, we are not encouraging hairstylists to try to be doctors or to try to diagnose. Simply alerting their clients of any questionable moles they see on their scalp is sufficient. As Iveta said, “just mention to your client that there’s a suspicious mole(s) on their scalp that they may want to get checked out by a doctor. That’s it. You don’t have to say [whether you] think it’s cancerous or not. Let the client go off and get it explored.”

I raised the question to Iveta about stylists who, for whatever reason, might feel uncomfortable bringing up a mole to their clients. Iveta indicated that the picture is bigger than that, as a hairdresser speaking up could potentially be lifesaving. “I don’t think people are going to get upset if you tell them about a questionable mole or a lesion… I think ninety-nine percent of people would be so thankful,” adding that “it’s better to say more than less.” Hairdressers are, of course, also welcome to ask their clients if they are interested in a mole check at the beginning of the service, to get a sense of whether certain clients will be receptive to it. Iveta asserted that she would certainly be pleased if a hairdresser suggested a mole check during an appointment: “I think if my hairdresser [asked to check my scalp for moles] I would be so impressed. I would give them an extra tip!”

Iveta also brought up the possibility, as citizens who are aware of melanoma, of being proactive with our hairstylists. In addition to mentioning the Sty-Lives initiative to our hairdressers, we can also ask them to keep an eye out for scalp moles during our appointments. “Ask your hairdresser—don’t wait for them,” Iveta suggested, adding that “once that customer asks their hairdresser to check their scalp, guess what? That hairdresser might start doing it for others.” Spreading the word this way, even if hairstylists don’t sign up for the Sty-Lives program, is still extremely beneficial. As Iveta points out, “it’s an issue of awareness, as most people don’t know they can get deadly skin cancer on their scalp.”

Iveta and I finished off our discussion by talking about how to get our own hairstylists involved. If you are reading this and considering mentioning the program to your hairdresser, we encourage you to do so! If they are interested, you can send their contact information to a member of the SYSF team and we will do the rest. We are also currently running the #HairHeroes challenge, where stylists can submit photos or videos of them performing a skin check to be shared on social media. Thank you all for reading and thank you so much to Iveta for her time, thoughts, and support.

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Only 23 days left! Move for Melanoma 2023

As we eagerly approach the month of September, our excitement grows as we prepare to shine a spotlight on the amazing accomplishments of our community.

The momentum leading up to our highly anticipated 5th annual Move for Melanoma fundraiser has been nothing short of inspiring. This event is not only a testament to our collective dedication to those touched by melanoma, non-melanoma, skin cancers & ocular/uveal melanoma but also a powerful reminder of the impact we can achieve together. Mark your calendars for the dates of September 22-24, 2023, as we unite once again for this remarkable cause.

Fundraising Tips

The team at Save Your Skin Foundation would like to thank the 21 participants who have registered, as well as the 11 teams that have already joined the Move for Melanoma. Your involvement has catapulted us beyond expectations, propelling us to reach 25% of our fundraising goal.

Our journey is far from over! With each step we take and each contribution made, we inch closer to our ultimate objective. The funds raised through Move for Melanoma have consistently offered invaluable support to those affected by melanoma, non-melanoma, skin cancers & ocular/uveal melanoma.

With only 23 days to go before Move for Melanoma, it’s the perfect time to do another round of requests for donations. Here are a few tips and tricks to help you:

  1. Post on social media frequently. People rarely donate the first time they are asked. By posting frequently, you’ll remind people who might have forgotten, and get better results.
  2. Send personal emails. Most people, when asked directly, will be happy to make a donation to a cause important to a friend or family member.
  3. Tell your story. This cause is important to you for a reason. People who are touched by your story will be more likely to give.
  4. Use an image. We all know the power images have. Consider including a photo of yourself or your family in your posts or emails.

And don’t forget to always include the URL to your fundraising page so that donations made as a result of your posts will be correctly assigned to your team.

For more on how to fundraise, including sample posts you can use, click here.

We’ve created some resources to help you get ready for Move for Melanoma. The resources include:

  • Participant Timeline – that offers tips and tricks for getting ready for the event
  • Donation Form – which you can print out and use to keep track of donations made to you with cash, cheque or credit card
  • Scavenger Hunt Printout – Print this out to lead your kids through a fun scavenger hunt.
  • Scavenger Hunt Instructions document – To help you prepare for the hunt.
  • Three Posters – Which you can print and post around town to help promote the event and get people to join your team

Social Media Posts & Copy

Save and share these posts on your social media accounts to encourage your network to donate to your team! Click on the images to download.

“On September 23-24th, I’ll be challenging myself to (insert activity) to raise funds for melanoma, non-melanoma skin cancer and ocular melanoma patients during #Move4Melanoma. As you may know, I was (or my mother/husband/sister/father/brother etc.) diagnosed with (insert type of cancer) in (insert year). What you may not know is that melanoma and other types of skin cancer are being diagnosed at an alarming rate, and that cancer patients need our help.

I ask that you please consider supporting me in fundraising for patients in need, so that everyone diagnosed with (insert disease) may have the same chances of survival. Every dollar donated will go directly to a patient in need in the form of treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment. Thanks in advance for your generosity. Donate here.”

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ASCO 2023 Data Report

Earlier this summer, Save Your Skin was fortunate enough to attend the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, Illinois, in order to hear the latest data from melanoma clinical trials. We are pleased to present the highlights from these exciting studies in our annual ASCO report, which this year includes data from trials relating to melanoma, non-melanoma skin cancers (NMSC), and uveal (ocular) melanoma. Please keep in mind that ASCO is an international association, and therefore studies outlined in this report are not exclusive to Canada.

This report includes:

  • Trial updates related to melanoma, non-melanoma skin cancers (NMSC), and uveal (ocular) melanoma
  • A glossary of abbreviations used in the report
  • A selection of melanoma-related news articles from the summer for supplemental reading

You can read the report here or by clicking on the cover image below. Thank you for reading!

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8th Annual Patients Redefining the Future of Health Care in Canada Summit

Are you ready to be a part of a groundbreaking event that brings together patients, caregivers, and healthcare stakeholders from across the country? The 8th Annual Patients Redefining the Future of Health Care in Canada Summit is here! Mark your calendars for the week of Nov. 13 and get ready to be inspired, educated, and empowered to shape the future of healthcare in Canada.

This annual patient education and awareness Summit is a collaborative effort between two organizations – Save Your Skin Foundation and the Canadian Psoriasis Network, in conjunction with an Indigenous volunteer from Kiyasiw Consulting. Together, they are committed to elevating the voices of patients and caregivers, amplifying their experiences, and addressing long-standing systemic issues related to equity and oppression in our health systems.

What to Expect:

The Summit promises an exciting lineup of community leaders, advocates, and experts who will engage in insightful discussions about the challenges faced in meeting people where they are at, highlighting Indigenous health needs, and exploring opportunities to modernize healthcare to meet the needs of all Canadians.

The Schedule:

  1. Nov. 13 – Challenges to Meeting People Where They’re At
    • Time: 11 AM – 4 PM EST
  2. Nov. 15 – Highlighting Indigenous Health Needs
    • Time: 12 PM – 4 PM EST
  3. Nov. 16 – Opportunities to Modernize Health Care to Meet the Needs of All
    • Time: 12 PM – 4 PM EST
  4. Nov. 17 – Patient Planning Session (restricted to patients/caregivers and related groups)
    • Time: 12 PM – 1:30 PM EST

Why Attend:

This summit is a unique opportunity to engage in open dialogue, gain valuable insights, and contribute to the transformation of the Canadian healthcare system. It’s a chance for patients, caregivers, and healthcare stakeholders to come together, share their stories, and collectively find ways to create a more inclusive and patient-centric healthcare environment.

By attending the summit, you will:

  1. Learn about the challenges faced by patients and caregivers in accessing healthcare services.
  2. Understand the unique healthcare needs of Indigenous communities and how to address them effectively.
  3. Discover opportunities to modernize healthcare and make it more accessible and inclusive.
  4. Connect with like-minded individuals and organizations dedicated to making a positive impact on Canadian healthcare.

Check out some of our content from last year’s Summit!

Ready to Register?

We’re thrilled to have you join us at the 8th Annual Patients Redefining the Future of Health Care in Canada Summit. Registration is now open, and you can secure your spot by clicking the link here!

Don’t miss out on this exceptional opportunity to be a part of a movement that aims to reshape the future of healthcare in Canada. Let’s work together to create a healthcare system that meets the needs of all patients, regardless of their background or circumstances.

We look forward to seeing you at the Summit!

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Hair Heroes Challenge

We are happy to announce that Save Your Skin Foundation has partnered with the Ontario Professional Hairstylist Association to launch the Hair Heroes Challenge!

The Challenge calls on all hairstylists and hair schools across Canada to show off  their skills and make a difference in the fight against skin cancer with Sty-Lives. This social media campaign in English and French aims to showcase just how simple and effortless skin cancer scalp checks can be. 

Participating is easy, and participants have two options:

Options 1: Shoot a captivating video (60 seconds or less) where they demonstrate their hairstyling prowess while performing a skin cancer check on their client.

Option 2: Capture the transformation with a before and after photo of their client’s hair, following a thorough check or styling session.

We had the pleasure of being interviewed by OPHA about the Challenge. Watch the video to learn more.

Want to participate? Don’t forget to include our official hashtags, #HairHeroes & #Sty-lives2023, mention Sty-Lives, and let your imagination run wild! The SYSF team will be on the lookout for the most imaginative video that not only promotes Sty-Lives, but also showcases the importance of skin cancer checks. You’ll stand a chance to win an amazing prize that will leave you jumping for joy! So, grab those scissors, unleash your imagination, and get ready to win big with Sty-Lives!

This challenge is running through all social media platforms such as TikTok, Facebook, Twitter & Instagram. Don’t forget to tag us! 

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A new framework for co-creating telehealth for cancer care with the patient community

Louise Binder from SYSF co-authored an excellent and insightful publication titled “A New Framework for Co-Creating Telehealth for Cancer Care with the Patient Community” published in The Patient – Patient-Centered Outcomes Research. Check it out here.

 

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Move for Melanoma 2023

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 22-24th, 2023. 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 2023 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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A Historic Milestone: Manitoba Proclaims May as the First Provincial Melanoma and Skin Cancer Awareness Month

May is Melanoma and Skin Cancer Awareness Month, and this year marks a significant achievement as the Province of Manitoba joins the cause by proclaiming May 2023 as the first-ever Provincial Melanoma and Skin Cancer Awareness Month. Save Your Skin Foundation and Ocumel Canada are at the forefront of this initiative, leading local, national, and international campaigns to raise awareness about the importance of prevention and early detection of skin cancers.

Discover a comprehensive list of initiatives for Melanoma Skin Cancer Month and Ocular Melanoma awareness HERE.

For the fourth consecutive year, Save Your Skin Foundation’s proclamation initiative has invited Canadian municipalities to take a firm stance against skin cancer and educate their communities about sun safety through mayoral proclamations. As of May 25, 2023, an impressive 43 municipalities have committed to declaring May 2023 as ‘Melanoma and Skin Cancer Awareness Month.’ Check the list HERE to see if your city is among them.

The Honourable Audrey Gordon, on May 25th, 2023, officially proclaimed the month of May 2023 as Melanoma and Skin Awareness Month in Manitoba. This remarkable step underscores the government’s recognition of the importance of efforts aimed at reducing the incidence of skin cancer.

"The Save Your Skin Foundation's tireless work and initiatives in raising awareness about non-melanoma skin cancers, melanoma, and ocular melanoma through nationwide education, advocacy, and awareness campaigns are truly commendable. Our government acknowledges the significance of efforts to reduce the incidence of skin cancer. I extend my best wishes to Save Your Skin Foundation for the success of their planned events during Melanoma and Skin Cancer Awareness Month."

Hon. Audrey Gordon

We are immensely grateful to the Honourable Audrey Gordon for her support and belief in the importance of sun safety.

Additionally, members of our SYSF team have had the privilege of presenting to the Mayors and Councils of several municipalities nationwide, sharing their personal experiences as patients and spreading the crucial message of sun safety and early detection of skin cancer.

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SYSF Survey: The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma

In 2022, we conducted a survey of our English- and French-language patient communities to gather patient-reported experience measures (PREMs) related to the experiences of adults with cutaneous melanoma in Canada. The survey focussed on side effects, the current care landscape, and the holistic experience of cutaneous melanoma. One segment of the survey focussed on the experience of those who received Pembrolizumab (Keytruda™) for stage II melanoma. We invite you to read the report here or by clicking on the image below. If you have any questions, please email info@saveyourskin.ca.

As always, we are grateful to our community of patients who offer their time and stories to us. You are the reason we fight for equitable and timely access to melanoma, ocular melanoma, and non-melanoma skin cancer care for all Canadians.

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