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Ocumel Canada Seeking Input for Ocular Melanoma Patient Experience Survey

~ Le français suit ~

Ocumel Canada invited all ocular melanoma patients at any stage, whether or not they have been treated with KIMMTRAK® (tebentafusp-tebn) for metastatic OM, to participate in this anonymous survey intended to gather patient/caregiver perspectives to inform treatment recommendations. We were looking for ocular melanoma patients to share their treatment experiences to help inform Save Your Skin Foundation’s treatment recommendations to the CADTH Common Drug Review (CDR) and to pan-Canadian Oncology Drug Review (pCODR).

By providing direct patient feedback we can help inform Canadian government decision-makers of the patient need, and potentially increase treatment options, therefore improving treatment outcomes.

This survey is now closed – stay tuned for the resulting report!

Thank you for your time. Together we can make a difference.

 

Nous invitons tous les patients atteints de mélanome oculaire, quel que soit leur stade, qu’ils aient ou non été traités par KIMMTRAK® (tebentafusp-tebn) pour une MO métastatique, à participer à ce sondage anonyme destiné à recueillir le point de vue des patients et des soignants afin d’élaborer des recommandations de traitement.

En fournissant des commentaires directs des patients, nous pouvons aider à informer les décideurs sur les besoins des patients, et potentiellement augmenter les options de traitement, améliorant ainsi les résultats du traitement.

Nous vous remercions de votre temps. 

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Updates on the Sty-Lives Program

Launched in December 2021, the Styling Hair and Saving Lives – Sty-Lives – program has been a huge hit!  Hair professionals, hair salons, and barbershops all across Canada are registering and using the resources created to help in the early detection of skin cancers. Click HERE to learn more about the free training program and resources, and see below for some of the media coverage the program is getting across Canada and in the U.S.

Recently, we also launched the Sty-Lives OPHA Challenge in partnership with the Ontario Professional Hairstylist Association!  Read more HERE and click HERE to watch the video about the program.

Stay tuned for announcements on additional partnerships we are building!

 

CBC

Global News Radio

CTV News

CHIPCHICK

BeautyCouncil.ca

Good Morning America
ABC News
yahoo!news

Eastlink
NY Post
Castanet Penticton

Squamish Chief
The U.S. Sun
MSN

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SYSF Seeking Input for Melanoma Patient Experience Survey

~ Le français suit ~

We invited all melanoma patients in any stage who received Keytruda™ or other systemic treatment(s) to complete the survey at the link below, intended to gather patient/caregiver perspectives to inform treatment recommendations. Patients sharing their treatment experiences helps inform Save Your Skin Foundation’s treatment recommendations to the CADTH Common Drug Review (CDR) and to pan-Canadian Oncology Drug Review (pCODR).

By providing direct patient feedback we can help inform Canadian government decision-makers of the patient need, and potentially increase treatment options, therefore improving treatment outcomes.

This survey is now closed – stay tuned for the resulting report!

Thank you for your time. Together we can make a difference.

 

Nous invitons tous les patients atteints de mélanome, quel que soit le stade, ayant reçu le Keytruda™ ou un ou plusieurs autres traitements systémiques à répondre à ce sondage, destiné à recueillir le point de vue des patients et des soignants afin d’éclairer les recommandations de traitement.

En fournissant des commentaires directs des patients, nous pouvons aider à informer les décideurs sur les besoins des patients, et potentiellement augmenter les options de traitement, améliorant ainsi les résultats du traitement.

Nous vous remercions de votre temps. 

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Get your tickets for our 2022 Giving Hope Gala: Virtual Pool Party Edition!

Join us for a fun, virtual pool party experience in a custom tropical world created just for us! Again this year, we’ll use an online video chat platform that allows us to connect virtually in a more interactive way. You’ll easily be able to move in and out of conversations like you would in person and take part in fun on-site activities, all while supporting an important cause!

The Gala will take place on Thursday, April 28, 2022 ~ 5-8pm PT, 8-11pm ET

Why Attend

Don’t miss the networking event of the year for the skin cancer community!

In real-time audio and video, you’ll be able to connect with Kathy Barnard and the Save Your Skin team, patients and survivors from across Canada, and cancer care stakeholders, all while raising funds for a great cause.

All you need is a computer with wifi and ear buds, a comfortable place to visit virtually, and your ticket! This virtual event gives you the closest thing to a real life party experience. Enjoy music, entertainment, games and great prizes!

All ticket purchases will receive a charitable donation tax receipt.

Celebrate with us ~ Click HERE to get your tickets!

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A Viking’s Challenge 2022 Recap

A Viking’s Challenge 3rd Edition was last weekend and we couldn’t be happier with how the event unfolded.

In total, 51 people participated, running a combined total of 841 km, or the equivalent of 28 crossings of Lake Winnipeg. Though Chris Isfeld’s cancer recurrence and the side-effects from his treatment made it impossible for him to travel to Gimli, MB and run with Shawn Bjornsson, they were united in spirit, along with the 51 other participants across Canada, by the knowledge that they were helping bring awareness to an important issue. Together, they helped raise over $15,000 this year. And donations are still coming in!

The Weekend in Pictures

From top left: Alan Dann, Shawn Bjornsson and friends in Winnipeg, Shawn Bjornsson and friends in Gimli, Shawn Bjornsson and friends at Ship and Plough Tavern, Rosemary Westie and friends, Shawn Bjornsson and a friend, Shannon Lamb-Lebel, Shawn Bjornsson, Emily Chowne, Genevieve and Summer the dog, Rosemary Westie and friends.

 

Thank You to our Sponsors!

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

  • Bristol Myers Squibb
  • Gimli Ice Festival
  • Ship and Plough Tavern
  • Lakeview Resort Gimli
  • Designer Closet Guys
  • BE Power Equipment

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A Viking’s Challenge 2022 is this weekend!

Want to participate?  It’s not too late!

Event Details

When: The weekend of 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. 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. The last few months have been pretty rough for me. As some of you know, in late 2021, a large mass was found on my right adrenal gland. After fighting melanoma for 3 years and finally getting the all clear in December 2020, this was not the news I’d hoped for. So back I went to treatment, first some radiation and now immunotherapy.

Luckily, I have access to these treatments in my own province, but not all melanoma patients are so fortunate. Many patients end up having to pay out of pocket to get to and from treatments, or worse, have to pay for treatments that aren’t covered. That’s why again this year, I’d like to invite you to participate in A Viking’s Challenge, the fundraiser I founded in 2020 to raise funds for melanoma patients.

Unfortunately, because of my treatment, I won’t be able to run the 30 km across Lake Winnipeg this year, but I’m inviting everyone to join the challenge and run or walk wherever you live. It would mean so much to me and I can assure you that you’d be helping make a big difference in someone’s life. To register or make a donation, visit bit.ly/AVC2022. Thank you!”

 

 

Click here to read more about it in the Abbotsford News

 

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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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Important Dates for 2022!

We have a very full and promising year ahead of us and we want you to be part of it! Here are some important dates to add to your calendar:

A Viking’s Challenge (Learn more below) – March 4-6, 2022
Giving Hope Gala – Virtual Pool Party Edition – April 28, 2022 @ 5-8pm PT / 8-11pm ET
Move for Melanoma – September 23-25, 2022
7th Annual Patients Redefining the Future of Health Care in Canada Summit – Week of November 14, 2022

                                                      

                                                       

 

A Viking’s Challenge – Click Here to Register!

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 became partially paralyzed from the waist down, they ran 30km across frozen Lake Winnipeg and raised almost $20,000 for melanoma patients.

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.

 

And don’t forget to check your skin every month!

There’s no better time to prioritize your health by making a resolution to check your skin every month for skin cancer.

Monthly skin checks are the best way to detect skin cancer before it spreads. And the easiest way to stick to your resolution is to schedule it! Simply set a monthly notification on your phone to make sure you don’t forget.

Early detection is so important as it can make all the difference in the case of any melanoma OR non-melanoma skin cancer diagnosis.

Click here to learn how to easily perform a skin check at home!

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Get ready for A Viking’s Challenge 3rd 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. 

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 2022 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 AVC medal. To learn more about Chris’s story and the inaugural event, click here.

 

Event Details

When: March 3 – 6, 2022
Where: Again this year, because of the pandemic, the event will take place virtually, allowing participants to run any distance they choose from any location in Canada and beyond.
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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SYSF Holiday Party 2021

You’re Invited!

Sunday, December 19th at 5pm PT / 8pm ET

 

This party will be hosted in our custom Topia virtual world, with lots of festive activities and surprises. This party is for all patients, family members and friends of the Foundation.

Come in your most festive apparel with your favourite holiday beverage!

Instructions for how to join the party

On Dec 19th, click here to start the party: 

https://topia.io/save-your-skin-foundation

What you’ll need:

  • A computer or a tablet – You’ll need a Windows or Mac desktop or laptop computer equipped with a camera, or a Android Tablet or Ipad.
  • For the best experience on Android tablets please use “desktop mode” in Chrome.
  • A supported web browser – Topia works best on Google Chrome, Edge, and Brave on desktop and laptop computers. For best results we recommend using one of these three browsers.
  • Headphones/ear buds – There is ambient sound in Topia which is personal to you. Headphones ensure a great experience. Without headphones, higher volume can result in feedback for other guests or mixed sounds which isn’t fun for anyone.

How to join:

  • On December 19 at 5pm PT | 8pm ET, click on this link to join: https://topia.io/save-your-skin-foundation. Don’t bother trying to go on beforehand as it will not be available.
  • When you first go in, you will be asked to choose a display name.
  • Your browser will ask for permission to use your camera and audio. If you have Zoom/Teams/Skype open you won’t be able to do this, so please make sure they’re closed first.

What to do once you’re in:

  • You can move around the space using either mouse clicks or your arrow cursor buttons.
  • You hear and see people better the closer you are to their little “Topi,” or person.
  • If you walk away from people you hear and see them less. People “fade out” as they get farther away.
  • As you explore, notice when your cursor turns into a pointer. This indicates that the object your mouse is on has a function. Click to interact with the object.

See you there!!

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