Patient Caregiver

Coping with the Emotional Impact of Cancer – Mental Health Week

Empowerment Through Connection: Join us during Mental Health Week for a special webinar tailored to individuals actively managing their cancer diagnosis, caregivers providing unwavering support, survivors navigating the aftermath, and anyone touched by cancer.

We’ll delve into the unique emotional and psychological dimensions of the cancer journey, fostering resilience and building connections within this community.

Our featured speakers include

Dr. Sue Johnson, Founding Director of the Ottawa Couple and Family Institute and the International Centre for Excellence in Emotionally Focused Therapy;
Lyanne Westie, SYSF Wellness Support Consultant;
Guest speaker

Join us for an enriching and supportive discussion that aims to empower you on your cancer journey. Together, we can foster resilience and build lasting connections.

REGISTER TODAY!

Embracing Connections: A Virtual Gathering for Ocumel Canada

Join us on July 12, 2023, at 5pm PST/8pm EST for a special virtual get-together hosted by Ocumel Canada. This unique event aims to create a safe and supportive space that fosters kindness and understanding.

Whether you’re a patient, caregiver, or anyone affected by Ocular/Uveal Melanoma, we invite you to come together for an hour-long call filled with inspiration and connection. Share your experiences, find solace in the company of others who understand, and discover the power of a compassionate community.

During this virtual gathering, we’ll provide a platform for open dialogue, encouraging participants to discuss whatever is on their minds. Together, we can uplift and empower one another as we navigate the complexities of living with Ocular/Uveal Melanoma.

Don’t miss this opportunity to connect with like-minded individuals, exchange stories, and find strength in shared experiences. Register now and mark your calendar for an evening of support, resilience, and hope. Let us stand united in the face of Ocular/Uveal Melanoma.

Please let me know your thoughts! Once you do, our team can begin promoting this on our website & social pages. On Monday we will brainstorm how this call should be ran but if you have any ideas please feel free to let me know.

REGISTER HERE!

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

With Thanks to All Move for Melanoma 2021 Participants, Donors, and Sponsors

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

95 participants and 29 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.

When we set the ambitious goal of raising $75,000 this year, we thought we might be aiming a little high. But clearly, we were right to dream big because, with your help, we ended up surpassing our goal!

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 five fundraising teams that raised the most.

Team Miller
Vancouver Canucks’ JT Miller and his wife Natalie fundraised in memory of Natalie’s mother who passed from melanoma last year. We can’t thank them enough for their support over the last year. Check out the Team Miller page here.

Team Mela-No-More
Based in Port Moody, BC, Team Captain Stefanie Lynch and her teammates organized a run/walk at Inlet Park and raised almost $11,000! Stefanie’s mother is currently fighting Stage 4 malignant melanoma. Check out her team page here.

Team The Eyes Have It
Based in Victoria, BC, Team Captain Nigel Deacon ran a marathon distance to inspire others to donate to this worthy cause. All together, his team raised an amazing $7,300 for ocular melanoma patients. Nigel was diagnosed with advanced ocular melanoma 10 years ago and now advocates for ocular melanoma patients across Canada.
Check out his team page here.

Team Stringer
Nicole and Michael Stringer hosted a virtual 3km or 5km run/walk in Red Deer Alberta and raised just under $5,000. Michael is currently fighting Stage 4 Melanoma. A heartfelt thank you to the Stringer Family. Check out their team page here.

The Laurence B. “For Life” Team
The Campbell River team, led by Laurence’s mother, Michelle, threw axes for 6 hours and raised almost $4,000. Amazing work everyone! Laurence is currently fighting ocular melanoma. Check out their team page here.

Move for Melanoma Sponsors

Finally, we’d like to acknowledge the many businesses that stepped up to support our event this year. Please show them your support!

#InItTogether Campaign – Melanoma Is Personal

We’ve teamed up with Hayley Wickenheiser again this year to bring awareness to those coping with a melanoma diagnosis. Summer is here, but if you’re not protecting yourself from the sun, the damage can be far-reaching. Melanoma is one of the top 10 cancers diagnosed in Canada and getting a diagnosis can be scary. Arming yourself with the right information you can literally change the course of your melanoma experience.

Ask about your mutation type. Do your research to find out your options. And know you are not alone in this.

Some Patients, Survivors, and Caregivers from the Save Your Skin Foundation family have come together share their story to inspire education and hope.

“I am newly diagnosed with metastatic malignant melanoma, and I plan to survive it.” – SHERI

“My melanoma came back, but I’m not letting fear in.” – BOB

“I was in end-of-life care when my doctor recommended I take part in a clinical trial.” – MIKE

“Learning that my melanoma was BRAF+ was a huge weight off my shoulders. That knowledge shaped my path through the disease.” – COLIN

“Melanoma research literally saved my life. Today I’m surrounded with the support of the melanoma community and I know they have my back.” – NATALIE

Check out this article in Elle magazine, dedicated to Canadians who have their own personal melanoma stories:

ELLE Canada – Summer is Back ~ Do you know what you need to know about melanoma?

Check out these “Melanoma is Personal” videos on YouTube And click here to see more clips on the SYSF youTube channel

SYSF Endorses the Declaration of Personal Health Data Rights in Canada

SYSF is pleased to announce that it has endorsed an important new initiative, aimed at advocating for the personal health data rights of Canadians. Developed by a patient and caregiver-led Data Working Group formed in 2019 from the annual Patients Redefining the Future of Healthcare in Canada Summit, the Declaration of Personal Health Data Rights in Canada is intended to create greater consensus on the fundamental principles associated with personal health data, particularly from the perspective of patient and citizen groups; in order to encourage the health ecosystem to work out how to achieve these principles efficiently and effectively in partnership with industry, policy-makers, other data custodians, and patients.

The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF. Since the Declaration’s launch in June 2021, it has been endorsed by 27 patient groups as well as 9 individual patients and caregivers.

Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.

The Declaration is available in two formats. To read or download the full Declaration, click here. To read the Executive Summary of the Declaration, click here.

Huge Thanks to All Supporters of SYSF’s Giving Hope Gala 2021!

From all of us at Save Your Skin Foundation, heartfelt appreciation for all of the love we received in support of our 2021 Giving Hope Gala. Thank you to all who purchased tickets, made donations, joined us at the event, sponsored the Gala, donated gifts to the auction – everyone! Not only did we have a blast partying on the dance floor, but we raised over $20,000 for melanoma, non-melanoma skin cancer and ocular melanoma patients.

Thanks also to…

* The devoted and caring Oncologists, Dermatologists, Nurses, and Medical Teams who look after us and all of the Patients and Caregivers we support

* Our Sponsors and Funding Partners for supporting our work tonight and throughout the year

* JT and Natalie Miller for generously sharing their time and resources to help share our message at the Gala, in our press release, and beyond

* Everyone who helped put this event together – our amazing team – Marianne, SYSF Program and Event Coordinator, Amy, SYSF’s Marketing and Communications Director, Lise, our Quebec Consultant, Kathy and Rosemary, and our Board of Directors, family and friends who always pitch in

Last but not least we wish to thank:

The Patients, Survivors, and Caregivers who joined us at the Gala, or are behind the Foundation, from BC and all over Canada. They are the inspiration behind our devotion to their well-being, and we are honoured to work on their behalf every day.

Thanks to Everyone near and far for your Support!

SYSF Webinar: Treatment Options for Melanoma Patients in the Adjuvant Setting

Join us for this free webinar, which reviews the latest news and clinical data related to melanoma treatment in the adjuvant setting, as presented in the 2018 conference season.

‘Adjuvant’ refers to patients with a stage II or stage III diagnosis. The majority of adjuvant patients typically undergo surgery to have their tumour(s) removed, but are not given immunotherapy or targeted therapy to prevent recurrence of the disease despite a known high-risk of relapse and mortality. Melanoma is an aggressive cancer; stage III melanoma means the cancer has spread from skin cells into the lymphatic system, and poses a dangerous risk for spread to organs, which is what depicts a stage IV diagnosis.

Dr. Claveau shares his key insights into what the landscape of adjuvant melanoma immuno-oncology treatment looks like for the near future in Canada. Dr. Adrian Gunaratne details the science behind targeted therapy and what is coming for Canadian melanoma patients in the adjuvant setting with a BRAF positive mutation. The discussion continues with a patient and a caregiver both having had treatment access challenges in the adjuvant melanoma setting, and how their experiences impacted their lives and that of their families.

Presenters:

Dr. Joel Claveau, Medical Oncologist, Hotel-Dieu de Quebec, Université Laval, Quebec City, QC
Adrian Gunaratne, PhD, Medical Science Liaison – Solid Tumors, Novartis Pharmaceuticals Canada
Natalie Richardson, Adjuvant Melanoma Patient, Managing Director, Save Your Skin Foundation
Eyyub Hajiyev, Caregiver to a loved one recently diagnosed with melanoma in the adjuvant setting

I’m Living Proof Connects Melanoma Patients and Survivors

When Save Your Skin Founder Kathy Barnard was diagnosed with Metastatic Malignant Melanoma in 2003, the first thing she did was look to the internet for anything that would inspire optimism for her prognosis; hopeful news, survivors, or treatment options. She didn’t find much.

From this experience was created the “I’m Living Proof” initiative and website, intended to provide a wealth of information, resources, and support to those touched by cancer, while also connecting patients and their families to a community of survivors who have shared their stories. This initiative was borne from Kathy’s desire to ensure that those diagnosed with melanoma know that surviving melanoma is possible –“I’m Living Proof”.

Visitors to the site are encouraged to read participating patients’ stories, and they are given the option to connect with these patients via a secure form privately shared between the Save Your Skin Foundation team in collaboration with the person wishing to connect with other patients or survivors.

An interactive map serves as a method for patients and survivors to reach people across Canada and around the world.

On the map we use stars to represent survivors; we do this to inspire everyone already diagnosed, and those who will be diagnosed, to reach for the stars because there is hope for survival. Those of us surviving melanoma today are living proof of that. We also hold stars close to our heart as we remember those we’ve loved and lost to melanoma. These individuals are our stars in the sky, which is why Save Your Skin donates an actual star to the family of every melanoma patient we lose with a connection to the foundation.

To give you a bigger and better interactive map for which to connect with other patients, we have moved the former I’m Living Proof website to be housed right here under our very own SYSF site. Click HERE to see the map!

Please feel free to check out our map and click on the stars in locations across Canada to read the stories and see videos of fellow melanoma survivors. If you feel you would like to speak with one of these folks, you can fill out a quick form and we will send your request to the person you wish to meet via email.

If you would like to share your story and join our support community via a star on the map or otherwise, you can click here to fill out a quick form to let us know you’d like to be in touch.

Tell us a little about yourself! And what you think about this program. We are here to help: Hand in hand we fight melanoma together.

Welcome!

A Thank You from Melanoma Caregiver

Written by Connie, wife and caregiver to her husband and melanoma patient, Ted.

A year ago my husband was diagnosed with Stage 4 melanoma with metastases to the lungs. Our world suddenly and drastically changed where fear and worry took over our days. In a whirlwind of appointments and consultations it became apparent that there would be numerous tests, scans, followup appointments and overnight trips that would take us to a specialized oncologist. Of course there was the chemotherapy as well. Once things became somewhat routine like, if I may be brave to say so, of just becoming a new norm the other part of life began to take over. Suddenly, I became the main income earner for my family along with caregiver alongside being a mother. How were we going to get through this? Or, how was I going to get use to looking at my husband daily crying inside with the thought of losing him to this dreadful disease? Living in a very rural and remote area I had no options for caregiver support, I had no family support and so I stood alone in my rollercoaster emotions trying to be strong and positive for my husband. Then one day I came across the Save Your Skin Foundation and met 2 incredible people, Karran Finlay and Kathy Barnard. These 2 people reached out to me from a distance, listened to me and in doing so I began to feel hope and renewed strength. I suddenly felt that maybe I wasn’t alone and I continue now to feel this way as I know in my heart that they are there and will continue to be so as the journey of fighting cancer continues with my husband.

Right now there is not a lot I can do to give back to this incredible Foundation and these 2 beautiful, compassionate women, but I can write this to say THANK YOU! To say that without them, I as a caregiver would be totally lost and in despair. To say THANK YOU for not ignoring me, for listening everytime I email or phone, for never being too busy to open your hearts! THANK YOU!

Coping with the Emotional Impact of Cancer – Mental Health Week

Empowerment Through Connection: Join us during Mental Health Week for a special webinar tailored to individuals actively managing their cancer diagnosis, caregivers providing unwavering support, survivors navigating the aftermath, and anyone touched by cancer.

Embracing Connections: A Virtual Gathering for Ocumel Canada

Webinar: Diagnosed with Skin Cancer? Here’s What To Do Next

With Thanks to All Move for Melanoma 2021 Participants, Donors, and Sponsors