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Vote Health First

In light of the upcoming federal election, Save Your Skin Foundation commissioned research by Nanos Research to better understand Canadians’ views around federal health priorities.  The results provide a snapshot of priorities for people in Canada and support the need for a comprehensive health care strategy in Canada.

To see the Nanos survey results, please click HERE   On June 17, 2019, we hosted a panel discussion on the results of the survey and the health priorities that affect all Canadians: ‘The Case of the Missing Health Platform’.

Click here to watch the recording of the event.

 

SYSF also issued a press release calling on all political Parties to do a better job at articulating a comprehensive approach to health care in the run up to the federal election. Click here to read the press release: Patient groups call on all federal Parties: State your health commitments for the 2019 federal election

 

VoteHealthFirst.ca has been launched to help Canadians have their voices heard regarding important health care issues surrounding the 2019 federal elections and beyond.

Vote Health First is a collaboration between Save Your Skin Foundation (SYSF), Myeloma Canada, Canadian Psoriasis Network and CONECTed for patient engagement in the upcoming federal election.

We have designed this site to be a one-stop-shop for information exclusively devoted to putting the concerns and needs of Canadian patients first in the upcoming federal election.

The site will be updated regularly and will include, amongst other documents and tools:

  • Information about federal-level health issues that are important to all Canadians, specifically Canadian patients;
  • Relevant updates about the upcoming election including what the electoral parties are saying about health care;
  • Ways for you to get involved.

Content will be updated regularly so check back throughout the next several months.

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Calling All Metastatic SCC Patients!

SYSF invites all patients and their caregivers to complete this survey on Libtayo/Cemiplimab therapy for adult cutaneous squamous cell carcinoma (SCC) in the metastatic setting.

This survey is intended to gather patient perspective to inform the Save Your Skin Foundation treatment recommendations to the CADTH Common Drug Review (CDR) and to pan-Canadian Oncology Drug Review (pCODR).

We invite all cutaneous squamous cell carcinoma patients who received Libtayo/Cemiplimab to complete this survey by July 17, 2019.

This survey is now closed, thank you to all who shared their experience.

 

Thank you!

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PeerVoice – Advances in Adjuvant Melanoma Therapy

We are pleased to announce that the PeerVoice activity entitled ”Advances in Adjuvant Melanoma Therapy: Working Together To Improve Outcomes’’ has now launched online.  SYSF is proud to endorse this work, and applauds the valuable work put into this educational resource.

This initiative features two expert panel discussions, verbally presented by:

Michael Smylie, MBCHB, FRCPC, Edmonton, Alberta

Joël Claveau, MD, FRCPC, Quebec City, Quebec

Carolyn Nessim, MD, MSc, FRCSC, FACS, Ottawa, Ontario

Presentation 1: Adjuvant Melanoma Therapy: Optimizing the Care Pathway

Presentation 2: Adjuvant Melanoma Therapy: Experts Appraise the Evidence

These verbal interview-style presentations are also available as downloadable transcripts, click here to view or read the presentations: PeerVoice: Advances in Adjuvant Melanoma Therapy

PeerVoice activities are designed to fill the unmet needs of the medical community by reporting information pertaining to clinically relevant advances and developments in the science and practice of medicine.  This independent learning activity is supported by Merck Canada Inc.

 

NEW! December 2019:  Minding the Melanoma Patient With Brain Metastases: Updates to Personalize Care

Listen to the recording, and/or download the presentation, by:
Marcus Butler, Medical Oncologist, University of Toronto  |  Princess Margaret Cancer Centre

Raising the Bar With Immunotherapy for Melanoma and Kidney Cancer: Strategies to Enhance Care. This independent learning activity is funded by Bristol-Myers Squibb Canada Co.

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Introducing Think Uveal Melanoma, by Immunocore

We are happy to share with you the launch of chapter 1 of a new Uveal Melanoma Disease Education Campaign website by Immunocore, thinkuvealmelanoma.com. (Note: Please use Google Chrome for the best user experience). We are pleased to endorse this website and to share it with our Medical Advisory Board and membership.

This initiative is an important milestone in educating and increasing the knowledge of ocular and uveal melanoma (UM) and its unique requirements, for healthcare professionals. This includes increasing the knowledge surrounding the diagnosis, referral, monitoring and treatment of UM, across the full spectrum of key stakeholders, such as Ophthalmologists, Ocular Oncologists, Retina Specialists, Medical Oncologists, in both community and academic centers.

This global campaign consists of three chapters that will be launched over the course of this year. Chapters 2 and 3 will educate healthcare professionals about the differences between uveal and cutaneous melanoma and the limitations of current treatment options. Global experts in the field of UM are partnering with Immunocore to create meaningful and relevant content. A multi-channel engagement campaign is surrounding the website to reach a broad range of key stakeholders and allowing for multiple virtual touchpoints.

Ultimately, Immunocore wants to

  • raise awareness of the unmet need in UM
  • educate physicians and other key stakeholders on metastatic UM (mUM) and the differences to metastatic cutaneous melanoma (mCM)
  • convey their commitment to exploring ways to address the distinct unmet needs of patients with UM

 

Click here to view the website, background information, and even an interactive module which simulates possible symptoms of UM: thinkuvealmelanoma.com

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Thank you to all SYSF Supporters!

As Melanoma Awareness Month draws to a close, we would like to thank all of our family and friends, volunteers, partners and supporters for their continued dedication to upholding the work done by the team at Save Your Skin Foundation.  We are dedicated to providing a community of oncology patient and caregiver support throughout the entire continuum of care, from prevention and diagnosis to survivorship. And with your help, that is what we are able to do.

Thanks to all who have donated to the upcoming Team Save Your Skin events – Rosemary’s D-Day 44 Challenge Run in Normandy next week, and to Chris’ Vikings Challenge Run Across Frozen Lake Winnipeg in March 2020.  Thanks also to all participants joining our MOVE for MELANOMA event this September – the teams are rolling in!

We were absolutely overwhelmed by the generosity of those who attended our Giving Hope Gala & Auction in Toronto on May 1st. The work we are able to do for patients is a direct result of your support, and for that support we are so grateful. Have a look at our Photo Gallery!  Here is a sneak peek:

 

 

 

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Move for Melanoma! 2019

On September 13 – 16, 2019, Save Your Skin Foundation is co-hosting a special Canada-wide fundraising event called MOVE FOR MELANOMA, a weekend-long challenge where teams participate in the activity of their choice (get creative!) while fundraising for the fight against melanoma.  Pick your city/community, pick your activity, and ready set go – Get MOVING for MELANOMA!

What is it?
Move for Melanoma challenges all Canadians to reach their own personal movement challenge (ex. walking, running, cycling, yoga, family activities, or other) while raising awareness and funds to support Canadians touched by melanoma, non-melanoma skin cancer, and ocular melanoma.

How to Get Involved
We’re asking all of our close friends and patients to become Team Leaders to participate in Move for Melanoma. Our team will help you organize the event, will create a personalized, easy-to-use fundraising platform just for you, and support you in getting the word out. Anyone interested can check out our customizable fund raising platform OR email our Team Save Your Skin coordinator Taylor Tomko at taylorkathleen@saveyourskin.ca 

Fund Raising
Funds raised through the Move for Melanoma challenge will go directly to helping Canadian melanoma, skin cancer, and ocular melanoma patients by supporting the work of the foundation and the patients we help both emotionally and financially, and advocating for all patients to have timely, equal access to life-saving treatments and therapies through health policy work.

Learn more about MOVE FOR MELANOMA – Visit the official fundraising page HERE!

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Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

May is Melanoma Awareness Month and it’s the perfect time of year to review a few easy steps we can all take to Be Sun Safe!

Spread Awareness

Join us in spreading the word about Melanoma Month by using one of our facebook banners as your cover photo! They are available for download HERE:

Sun Safety

Help us share the message about Sun Safety! Download our Sun Safety infographics by clicking on the images below and share with your friends and family!

      

Examine Your Skin

Learn how to perform a monthly skin self-exam!  When caught early, skin cancer is very treatable.

Patient Support

For those living with melanoma, support can be vital to the healing process. Save Your Skin Foundation provides a collection of resources as well as several ways for patients to connect with others or with private support. If you know someone touched by melanoma, please help them to connect with us.

We provide one-on-one support through Founder Kathy Barnard. We also provide support from other patients and survivors through our initiative “I’m Living Proof”

Click HERE for a summary of the ways you can connect with other patients, survivors, and caregivers touched by melanoma and non-melanoma skin cancers, and ocular melanoma.

Press Release

If you’re interested in what Save Your Skin is working on for Melanoma Awareness Month, check out our official press release, which includes vital information about melanoma rates in Canada, prevention and detection, and how to support those battling skin cancer.

Public Service Announcement

Click here to watch our new video cut about sun safety and skin cancer awareness:

 

 

Stay tuned for more updates throughout May – Melanoma Awareness Month!

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Team Save Your Skin Runs the Beaches of Normandy on D-Day 2019

Guest post by Rosemary Westie, ultra marathon runner and member of Team Save Your Skin, who is traveling to France in June 2019 to run the race of a lifetime. 

On June 6th, 1944 hundreds of thousands of soldiers stormed the beaches of Normandy to begin the drive that would eventually break the German occupation of Europe.  Many of those soldiers paid the ultimate sacrifice.

I have been fortunate to wear my Save Your Skin Jersey in many amazing races around the world, but none more meaningful than the D-Day 44 Challenge I will be running this June 6th on the 75th anniversary of D-Day.

This amazing race hugs the Normandy Coast line, and has us running over sand dunes and pebble beaches, through marsh lands and beautiful villages.  The race begins in Pointe Du Hoc, high on a cliff overlooking the English Channel where in 1944, 200 elite Rangers climbed the chalk cliff on a mission to find and destroy the large battery guns firing at the troops arriving on the beaches.  200 men began the climb, and 30 men survived.

From there we will run across the beaches, Utah, Omaha, Gold, Juno and Sword, all still scattered with memorials and reminders of the life changing battle that took place there so many years ago.  Ultimately, after running along the beautiful coastline we will finish our run at Pegasus Bridge.  It was within meters of here that Horsa Gliders were deployed in the evening of June 5th, to secure the bridge to aid in the landing force which would be arriving in the morning at Sword Beach.

It is fitting that the official finish line is just across the bridge, at the Café Gondree, the first house to be liberated in WW11.  Here, Ms Gondree, who inherited the café from her father and remembers the relief and joy they felt when the first British commandos knocked on their door, will be pouring champagne for all of the participants taking part in the D-Day44 Challenge.

On this day there are 2 events, the 44 mile run, which I will be participating in, and a 22 mile walk, which will stretch from Juno Beach to Pegasus Bridge.  I am really pleased that my husband Tom, a long time supporter of our Save Your Skin Foundation, will be taking on the 22 mile walk.

Tom and I have both been very lucky in our lives, surrounded by good family and friends, and more importantly good health.  Not everyone we know has been so fortunate.

When my sister Kath was diagnosed with late stage melanoma back in 2003, it was shattering.  We were petrified that we would lose her, but miracles do happen, and although it has been an uphill battle she is still with us today.  Kath has always been an amazing person, very thoughtful, giving and strong.  Strong mentally and physically.  It is these qualities that have kept her going through her battle with melanoma,  and these same qualities that she now calls upon to help anyone else struggling with this cruel form of cancer through our, Save Your Skin Foundation.

I understand that running 44 miles will be a challenge, but I am also humbled every single day by people dealing with real challenges, challenges they did not choose.  Like taking on a life threatening disease, or bravely running onto a beach, miles from home into enemy fire, sacrificing everything for the safety of others.

So friends, at this time I am reaching out to ask for a small donation. Through this event we are hoping to raise some money for our Save Your Skin Foundation, which provides emotional and financial support to those dealing with melanoma.

Click here to make a donation in honour of Rosemary’s Run

 

Also, in support of the organizers of this event, my family will be contributing to the Blesma Foundation.  Blesma, is an organization in Britain that supports veterans that have lost limbs, their eyesight, or are struggling with post traumatic disorder.

Thank you in advance for your support,

Rosemary Westie

 

 

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SYSF Collaborates with National Comprehensive Cancer Network

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.

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.

Today marks an exciting day for non-melanoma skin cancer patients, with the release of the new booklet, NCCN Guidelines for Patients®: Squamous Cell Skin Cancer, endorsed by Save Your Skin Foundation, and made possible by funding through the NCCN Foundation®. This new book of patient information explains prevention, diagnosis and treatment for squamous cell skin cancer—the second-most common skin cancer (after basal cell cancer). Squamous cell and basal cell skin cancers are responsible for about 5 million annual incidents of non-melanoma skin cancer in the United States1—making them more prevalent than all other types of cancer combined2. Incidence rates have been rising for squamous cell skin cancer in recent years, particularly in younger people3. (source)

This new booklet explains in detail the diagnosis of squamous cell skin cancer, treatment and procedure options, but it also provides personal accounts from patients who have experienced the SCC journey, as well as treating centres and patient resources such as a list of questions to ask at doctor appointments. Save Your Skin Foundation is pleased to support these new guidelines document, and to help connect patients with the resource, as well as to connect NCCN with patients who so generously shared their perspectives with us for the development of the booklet.

SYSF has every confidence that the new NCCN Guidelines for Squamous Cell Carcinoma will help patients understand and manage their skin cancer diagnosis, treatment, and recommended follow-up routine.  This comprehensive resource gives skin cancer patients a reliable checklist to inform decisions in their care, which is much-needed for this common form of cancer, and even more helpful in the metastatic setting.

We look forward to continued collaboration with NCCN, and will offer our support with any new skin cancer guidelines or updates to existing booklets.

To view the guidelines, please click the links below:

NCCN Guidelines for Patients®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Melanoma

NCCN Clinical Practice Guidelines®: Uveal Melanoma

NCCN Guidelines for Patients®: Distress

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

New! NCCN Guidelines for Patients Explain How to Recognize and Manage Immunotherapy-Related Toxicities, July 2020:

Click here to view the new NCCN Guidelines for Patients®: Immunotherapy Side Effects series

 

Virtual Library of NCCN Guidelines® AppAvailable for iPhone/iPad and Android Smartphone/Tablet

 

February 28, 2019 press release detailing news of the NCCN Guidelines for Patients® ~  Squamous Cell Skin Cancer: New Patient Resource from NCCN Clears up Confusion around Highly Common Type of Skin Cancer

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SYSF Webinar: Ocular Melanoma

Ocular Melanoma – Innovative Treatments and Beyond

With Presenters:

Dr. Marcus Butler, Princess Margaret Cancer Centre, Toronto, Ontario, Canada

Dr. Omid Hamid, The Angeles Clinic and Research Institute, Los Angeles, California

Nigel Deacon, Ocular Melanoma Survivor/Patient, British Columbia, Canada

This webinar provides an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler share their knowledge of current practices and care pathways, identifying the most pressing needs for patients. They also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon shares his experience with this rare cancer; Kathy Barnard facilitating.

Missed the webinar? Listen to a recording of the presentation here, or watch it on our YouTube channel here.

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