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Giving Hope Gala Special Guest!

Hey our biggest Gala event is coming up…”Covid style”!

Buy a ticket and come for some fun – $35 gets you in.

This gala is all done on a virtual platform…wait, what does that mean? Well when you click the link to enter, you “spawn” a comic character that becomes you and you land in the main area where you are greeted by others. Your “person” walks with the others to the tables as the event starts out. Yes there is skin cancer info there but also…dancing!! mingling! and chatting. Get your person to walk up to another and you can chat with anyone, using your computer camera and ear buds! So great, so inventive!! Its going to be fun!! And… you will get to see one of our star personalities, Professor Mark Zee Spot!!

Join us for a fun, virtual gala experience in a custom world created just for us! We’ll use a new online chat platform that allows us to connect virtually and easily move in and out of conversations like you would in person.

Tickets are just $35!
Charitable donation receipts will be provided

All you need is a computer with wifi and video, some headphones, and a comfortable place to visit virtually!

Be ready for our Giving Hope Gala with the Save Your Skin Foundation Signature Cocktail (or Mocktail):

Tequila Stay-Out-of-the-Sun(Rise) !

The Giving Hope Gala is going virtual this year, but that doesn’t mean it won’t be a night to remember. In fact, to help everyone get ready, we’ve secured a guest presentation by STAR PERSONALITY

World-Renowned Mixologist Professor Mark Zee Spot!

PLEASE CLICK HERE TO READ IMPORTANT INFORMATION BEFORE JOINING THE GALA

COVID-19 Patient Impact Survey Report – Spring 2021

To follow up with our COVID-19 Impact Survey of April 2020, we ran a second survey from January – February 2021 to assess the continued impact of the pandemic on the medical needs of patients with melanoma, ocular melanoma, and non-melanoma skin cancer.

Click here to read the full report, or scroll to the last page to read the conclusions and the comparison to last year’s survey results.

Thank you to all who participated.

If you need any additional information about or support with COVID-19 issues, please visit COVID-19 Information Hub for Melanoma and Skin Cancer Patients

Giving Hope Gala 2021

In Celebration of our 15th Anniversary, SYSF Presents the 2021 Giving Hope Gala!

Join us for a fun, virtual gala experience in a custom world created just for us! We’ll use a new online chat platform that allows us to connect virtually in a more human way. You’ll easily be able to move in and out of conversations like you would in person with the platform’s spatial video, all while supporting an important cause.

Plus, we’ll have lots of fun on-site activities to keep you entertained!

Why Attend

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, headphones and a comfortable place to be while you attend virtually! This event will also provide the latest information on sun safety, skin cancer prevention, melanoma and non-melanoma skin cancer treatment in Canada, upcoming SYSF initiatives and events, plus fun and surprises, all from the comfort and safety of your home.

Celebrate with us!

Mark your calendars. The Gala will take place on
Thursday, April 29, 2021 from 5-8pm PT, 8-11pm ET

Dress Code

This is a business casual event. We encourage you to dress to look polished while still being comfortable. And don’t forget to bring out your nicest cocktail glasses!

How to join the gala

The official party link will be sent to all ticket holders on the week of the gala.

Recap of A Viking’s Challenge 2021

A Viking’s Challenge 2nd Edition ended yesterday and we couldn’t be more happy with how the weekend unfolded.

In total, 64 people participated, running a combined total of 855 km, or the equivalent of 28.5 crossings of Lake Winnipeg. Though COVID-19 made it impossible for Chris Isfeld and Shawn Bjornsson, the co-founders of the challenge, to run together on the lake this year, they were united in spirit, along with the 62 other participants across Canada, by the knowledge that they were helping bring awareness to an important issue. Together, they helped raise almost $9,000 this year. And donations are still coming in!

Thank you to our sponsors!

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

Be Power Equipment
Gimli Snowmobile Centre
RONA Gimli
Sobeys Gimli
Designer Closet Guys
Ship & Plough

The Weekend in Pictures

From top left: Chris Isfeld, Shawn Bjornsson, Natalie Richardson, Mike Allan, Rosemary Westie, Chris Isfelf and family, Tom Tomko, Shawn Bjornsson, Alan Dann and friends, Brett Knight, Delane Knight, Scott Barnard, Kathy Barnard, Rosemary Westie, Cathi Wetsch, Josée Pelletier, Karen and Brad Sheffield.

Medal Update

For those of you who participated and asked for a medal, you should be receiving it before the end of the month. If you didn’t participate or want another way to commemorate this event, consider buying a branded t-shirt instead!

Donate to show your support

If you’d like to show your support for this event, it’s not too late to donate. You can do so here.

As always, your donation will go directly to patients and their families so they can access the best treatment and care. This weekend, many of us were running knowing that the money we raised would go directly to the Stringer family, who is currently facing large treatment bills and having to stay away from home to treat side-effects.

On behalf of all the patients and families that have been supported by Save Your Skin Foundation over the years, a huge thank you for your support!

What is Lymphedema?

Although we don’t often talk about it, Lymphedema is a common side effect of the surgery that many metastatic melanoma or non-melanoma skin cancer patients receive to remove nodal disease. It affects men and women, and can be uncomfortable and often painful, affecting daily activity.

Most often, lymphedema affects the arms and legs, however, lymphedema can also occur in other parts of the body, including the head and neck.

Despite best efforts to prevent it, I myself was the lucky recipient of a lymphedema diagnosis in 2014 after CLND (Completion Lymph Node Dissection) surgery in my right groin following stage IIIB nodular melanoma diagnosis. To this day I am learning how to cope with this condition which affects my right upper leg, and through this research I found a supportive group right here in B.C. – British Columbia Lymphedema Association – and they work with similar groups across Canada. Please see below for a full list of Lymphedema contacts in your area.

“Lymphedema is the abnormal buildup of fluid in soft tissue due to a blockage in the lymphatic system. The lymphatic system helps fight infection and other diseases by carrying lymph, a colorless fluid containing white blood cells, throughout the body using a network of thin tubes called vessels. Small glands called lymph nodes filter bacteria and other harmful substances out of this fluid. However, when the lymph nodes are removed or damaged, lymphatic fluid collects in the surrounding tissues, causing them to swell. Lymphedema may develop immediately after surgery or radiation therapy, or it may occur months or even years after cancer treatment has ended.” (Source)

People with lymphedema in an arm or leg may experience the following symptoms:

Swelling that begins in the arm or leg matching the quarter of the body treated for cancer
“Heavy” feeling in the arm or leg
Weakness or decreased flexibility
Rings, watches, or clothes that become too tight
Discomfort or pain, although often there is no pain
Tight, shiny, warm, or red skin
Skin that does not indent at all when pressed, or hardened skin
Thicker skin (hyperkeratosis)

Estimates from recent Canadian sources indicate that approximately 1 million Canadians have the incurable disease, many unaware of the true cause of their swelling which is often misinterpreted as fat. There are many causes of lymphedema. Lymphedema appears in two forms; a categorization based on the initial cause either primary or secondary.

Secondary lymphedema, presenting as swollen, heavy limb(s) and an immune system that can’t do its job, results from post trauma damage to the lymphatic system. Secondary Lymphedema can be triggered by accidents, injuries and cancer-related surgeries such as CLND (Completion Lymph Node Dissection) other non cancer surgeries, cellulitis infection, obesity & prolonged edema from other causes such as heart failure all of which can damage lymph nodes and lymphatic channels.

Primary lymphedema is less common but can occur at any stage in life from birth through to mid 50’s, a common age of onset. To read more about these types of Lymphedema, please visit BC Lymphedema Association – What is Lymphedema

Treatment of Lymphedema should be done by a Health Care Professional (HCP) who has been trained in the care of lymphedema/lipedema/lymphatic pathologies. Treatment may be with Combined Decongestive Therapy (CDT), CDT consists of Manual Lymph Drainage, Skin Care, Compression and Exercise. Or, it may be possible to use compression alone, under the supervision of a trained HCP.

There are a lot of things that a person, especially cancer survivors could do to ensure that lymphedema is delayed or the severity is reduced. The goal of the BC Lymphedema Association (BCLA) is to provide information and support for those newly diagnosed, uncertain about what is happening to them and where to turn for help. The majority of the medical profession know very little about lymphedema or how to treat it.

BCLA is a resource to help patients find therapist, fitters, and suppliers & learn more about how to manage their condition. For more information and to join in their World Lymphedema Day awareness events visit their website www.bclymph.org.

And in other provinces, please see the following:

Alberta Lymphedema Association – Alberta Lymphedema Association

Atlantic Clinical Lymphedema Network – About ACLN – Atlantic Clinical Lymphedema NetworkAtlantic Clinical Lymphedema Network (atlanticlymph.ca)

Lymphedema Association of Manitoba – Lymphedema Association of Manitoba (lymphmanitoba.ca)

Lymphedema Association of New Brunswick – Lymphedema Association of NB – Home | Facebook

Lymphedema Association of Newfoundland and Labrador – Lymphedema Association of Newfoundland and Labrador (lymphnl.com)

Lymphedema Association of Nova Scotia – Lymphedema Association Of Nova Scotia (lymphedemanovascotia.com)

Lymphedema Association of Ontario – Lymphedema Association of Ontario – Home (lymphontario.ca)

Lymphedema Association of Quebec – Lymphoedeme Lymphedema Association Quebec – Infolympho

Lymphedema Association of Saskatchewan – LAS – Lymphedema Association of Saskatchewan (sasklymph.ca)

A Viking’s Challenge is Here!

Chris Isfeld and Shawn Bjornsson are getting ready for one epic weekend. On Saturday, March 6th, 2021, they’ll lace up their running shoes and set out to complete ‘A Viking’s Challenge‘ for the second year in a row.

This year, Chris Isfeld is planning on running 30 km with his girlfriend and two sons. Because of COVID-19 restrictions, he won’t be able to run on the lake, so instead, he’ll be running on the Matsqui Trail along the Fraser River near his home in Abbotsford, B.C.

Because of the warm weather, Shawn Bjornsson won’t be able to run on the lake either. So instead, he’s decided to run twice the distance of the lake, or a total of 60 km in one day!

“This will be a long, strenuous, exhausting day BUT this is nothing compared to the hundreds of hours so many people like my friend Chris have done getting treatment. So this run is for Chris and everyone that has needed treatment and support” he said of his plans.

As of this writing, 53 people have registered to run with them. Though they’ll be running in different locations all over Canada, they’ll be united by the knowledge that they are running in support of melanoma patients and survivors, people like Chris Isfeld, who four years ago, was diagnosed with late stage melanoma.

CHRIS’S STORY

Chris was given lifesaving immunotherapy treatment just in time. The treatment was challenging but it proved to be effective. The cancer stopped growing and the side effects became more manageable over the next few months. By December 2018, just one year after his melanoma diagnosis, he was lacing up his running shoes again.

The results of his latest PET/CT scan, on November 2, 2019, show an almost complete metabolic response; he is well on the way to becoming NED (No Evidence of Disease).

THE CHALLENGE

After he recovered, Chris had been frequently running and practicing yoga to overcome the physical and emotional anguish he was feeling.

In an interview with Global News, he said:

“A friend of mine, Shawn Bjornsson from Winnipeg, posted a photo after he did a 5K run in -40, and for some reason, I just made a comment and said, ‘Hey, I’ll race you across the lake,’ just as a joke, But a week later, I thought about it, and thought, ‘You know what, this is an absolutely great idea.’

“It gives me something to focus on, and obviously with my diagnosis, I had gotten to know the people at Save Your Skin Foundation very well, and decided that I should do it as a fundraiser and raise money for them.”

THE RACE

True to their Viking roots, they didn’t back down from a challenge. On March 7, 2020, they ran about 30 km from Grand Beach, Manitoba to Gimli, Manitoba, raising almost $20,000 for Save Your Skin Foundation. Read more about last year’s race here.

THIS YEAR’S CHALLENGE

Last year’s race was a personal challenge for Chris and his friend Shawn, but since so many expressed an interest in joining the challenge in future years, Chris has decided to open the challenge up to the general public 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.

To participate, runners have to pledge to run a certain number of kilometres. So far, 53 people have pledge to run a total of 748 km, or the equivalent of 25 crossings of Lake Winnipeg!

So what are you waiting for? Register now to complete A Viking’s Challenge!

Young Winnipeg girl makes buttons for a good cause

A young Winnipeg girl named Drea has been busy during the pandemic making buttons for face masks. The ingenious buttons attach to your glasses to take the pressure off your ears.

With the help of her grandmother Suzanne, Drea launched ‘Designs by Drea’ and began making and selling the buttons in the summer of 2020. It was always their intention to donate a portion from each sale to Save Your Skin Foundation.

Drea’s uncle Wes has stage 2 high risk melanoma and just finished a year of Immunotherapy treatment.

Last month Drea donated half of her profits to Save Your Skin Foundation, donating the other half to another Canadian skin cancer charity to support efforts to find a cure for melanoma.

You can still purchase buttons at $3.00 for one pair or $5.00 for 2 pair. To order email triathlonski@gmail.com

Global Coalition launches Skin Check App and Video

In response to the Covid pandemic, the Global Coalition for Melanoma Patient Advocacy has launched two skin self-exam tools to encourage individuals to perform skin self-examinations.

In the fight against melanoma skin cancer, early detection and treatment is critical.

Both the voice-activated app and the video are free to use, so we encourage everybody to find just 10 minutes each month and make conducting a skin self-exam part of their regular routine.

1. A voice-activated digital assistant ‘Skin Check’ app

Available on both Amazon’s Alexa and the Google Assistant platforms, the app guides people through what to look for, and the seven steps for conducting a full-body skin exam.

The assistant finishes by offering to set a recurring monthly reminder for the exam.

Once enabled, users can simply ask Alexa or Google: “Open Skin Check”

2. A skin self-exam video

Similar in scope to the app, the video covers the ABCDE warning signs of melanoma, and the seven steps for checking the body.

Pauses between the seven steps have been included in the film, so that the viewer can simply take their phone or tablet into a bathroom, hit play, and follow the instructions in real time.

About The Global Coalition for Melanoma Patient Advocacy

The Global Coalition for Melanoma Patient Advocacy was formed in 2014 by the Melanoma Research Foundation in response to the global need to bring the patient voice to the melanoma space.

The group has grown to include organizations from 27 different countries and is enthusiastically supported by its partners around the world, as well as the global patient, healthcare and pharmaceutical communities. The Coalition meets the vital needs of the worldwide melanoma community through three working groups, which each specialize in a unique area that addresses globally relevant issues for melanoma patients, encompassing:

Melanoma Awareness and Patient Resources
Patient Advocacy and Access to Treatment
Collaboration and Recruitment

The Global Coalition for Melanoma Patient Advocacy meets annually and is determined to make the deadliest skin cancer curable through its worldwide partnership. For more information or with questions about the Global Coalition, email global@melanoma.org.

Sun Safety in the Winter

The arrival of frosty weather prompts the annual changes from t-shirts to turtle necks and flip flops to boots. While cold lemonade is left behind for hot chocolate, one routine that must remain through the seasonal shift is sun safety. Winter leads many to believe that sun protection is no longer required. In reality, fresh snow can reflect between 80-90% of UV rays. The reflection from snow combined with the impact of direct sunlight can therefore result in double exposure.

This high exposure can be especially worrisome while doing winter sports such as skiing and snowboarding. While practicing these sports, people are exposed to blankets of reflective snow along with the consequences of both the sun and the altitude. At higher elevations, UV radiation is absorbed at a lower rate and as a result the UV rays are considerably stronger. The World Health Organization has noted that a 1000 meter increase in altitude is associated with an increase of nearly 10 per cent in UV radiation. To put that into perspective, the ski resort with the highest elevation in Canada is 2,730 meters. According to the estimation, the ski resort faces almost a 30% increase in UV levels due to altitude.

In addition to this, cloudy skies are not enough to stop the penetration of the sun’s rays. The clouds are actually thought to make the sun more harmful because they cause an unpredictable scattering effect of UV rays.

Taking all of this into consideration, there are actions that can be taken to stay safe from the sun throughout winter. First and foremost, it is advised to wear a sunscreen that is waterproof. This sunscreen should be applied and reapplied especially to often missed areas like the nose, ears, neck and chin. Additionally, layering clothing protects the rest of the body from sun exposure and provides warmth from the cold weather. Finally, gear like helmets and goggles used for winter sports should not be neglected since they act as both a protectant from injuries and the beaming sun. Evidently, winter brings about changes in attire, activities and weather but the importance of sun safety remains. While we should definitely still get outside in the winter for our dose of vitamin D, we should always make sure we’re protecting ourselves and those we love.

New NCCN Guidelines: Survivorship

SYSF wishes to congratulate the National Comprehensive Cancer Network^® (NCCN^®) on their new release of incredibly valuable patient/caregiver resources!

Click on the links below to take a look at the new, free informational resources on health and wellness for cancer survivors. These two new NCCN Guidelines for Patients^® are focused on healthy living and managing late and long-term side effects, and include appropriate ongoing screening for recurrence.

The books Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects provide jargon-free roadmaps for what comes next after initial cancer diagnosis and therapy.

Save Your Skin Foundation is pleased to have provided endorsement for the books, as well as several quotes from skin cancer patients, survivors, and caregivers in our own community! Kathy, Mike, Chris, Yvonne – and many more – have offered their helpful words of wisdom to all who read these. And they join the ranks of SURVIVOR TV show winner and cancer survivor, Ethan Zohn, who can attest that “Getting a cancer diagnosis is scary. Surviving cancer can be even more scary.” Click here to read the full press release

Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and accessibility apply), as confirmed with members of the Save Your Skin Foundation Medical Advisory Board. Canadian doctors do refer to the NCCN clinical guidelines, and they do support the distribution of NCCN patient guidelines to Canadian patients.

There are guidelines created for many cancers; we have listed below the links to each most relevant to the topic of skin cancer or ocular melanoma, as well as supportive topics such as immunotherapy or treatment side effects, and mental wellness issues and survivorship. NCCN guidelines are easy to read, well illustrated, and a valuable resource for patients, available as online e-booklets, download-able PDF files, or on the “NCCN Guides for Cancer” app for iPhone or Android devices and tablets.

To view the guidelines, please click the following links:

NCCN Guidelines for Patients^®: Melanoma

NCCN Guidelines for Patients^®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Immunotherapy Side Effects series:

Immunotherapy Side Effects: CAR T-Cell Therapy and Immunotherapy Side Effects: Immune Checkpoint Inhibitors

NCCN Guidelines for Patients^®: Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects

NCCN Guidelines for Patients^®: Distress

NCCN Guidelines for Patients^®: Adolescents and Young Adults with Cancer

Coming Soon – Guidelines for Patients on Basal Cell Carcinoma, and Uveal/Ocular Melanoma! If you wish to read the Clinical Guidelines (for Health Care Providers), please see here: NCCN Clinical Practice Guidelines^®: Uveal Melanoma

The Patient books are available for free to view and print at NCCN.org/patients or via the NCCN Patient Guides for Cancer App: Virtual Library of NCCN Guidelines^® App – Available for iPhone/iPad and Android Smartphone/Tablet

The National Comprehensive Cancer Network^® (NCCN^®) is a not-for-profit alliance of 28 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.

Giving Hope Gala Special Guest!

Hey our biggest Gala event is coming up…”Covid style”!

Buy a ticket and come for some fun – $35 gets you in.

All you need is a computer with wifi and video, some headphones, and a comfortable place to visit virtually!

PLEASE CLICK HERE TO READ IMPORTANT INFORMATION BEFORE JOINING THE GALA

COVID-19 Patient Impact Survey Report – Spring 2021