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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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SYSF’s Giving Hope Gala 2019

Back by popular demand! Save Your Skin Foundation is hosting our 2nd annual Giving Hope Gala and Auction in Toronto on Wednesday, May 1, 2019.  This year we will kick off Melanoma Awareness Month to increase understanding of skin cancer and ocular melanoma, to raise funds to support the work of the foundation and the patients we help, and to unify collaborative efforts of involved stakeholders nationwide.

Join us for a casual evening of buffet-style tapas and served hors d’oeuvres, decadent desserts, and our signature cocktail – all while supporting an important cause. The fun will include an interactive photo booth, silent auction, informative presentations, music and dancing, printed takeaways, and a goodie bag.

NEW this year – all ticket purchases will receive a tax receipt!

Click here to get your tickets

 

Giving Hope Gala & Auction – May 1, 2019 – St. James Cathedral Centre, downtown Toronto, Ontario

This one-evening event in Toronto will provide up-to-the-minute information on melanoma statistics in Canada, a recap of sun safety and skin cancer prevention methods and initiatives with Kathy Barnard, the Save Your Skin team, and local stakeholders including physicians, patients, survivors, supporters and partners.

Despite being 90% preventable, over 80,000 cases of skin cancer are diagnosed in Canada each year. Of these, more than 7,000 are melanoma, the mostly deadly form of skin cancer. With incidences of this disease on the rise, awareness, education, and patient support are more crucial than ever. Thank you.

Stay tuned for more details.  Check out photos from last year’s Gala HERE

FAQs

Are there ID or minimum age requirements to enter the event?  No – everyone is welcome! Kid-friendly

Dress code?  Business casual – and bring your dancing shoes!

How can I contact the organizer with any questions?  Please email natalie@saveyourskin.ca or call 519-270-0834 / 800-460-5832

Do I have to bring my printed ticket to the event?  No, we’ll have our list handy to make it easier for you!

Can I update my registration information?  Yes, feel free to be in touch anytime.

Is it ok if the name on my ticket or registration doesn’t match the person who attends?  Yes

Thank you to sponsors and supporters of our 2018 Giving Hope Gala & Auction:

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Introducing: Ocumel Canada

For the past year, Save Your Skin Foundation has been working with ocular melanoma (OM) survivor and advocate Nigel Deacon, to improve OM patient care across the country. Together we created a survey and resulting report in order to gain insight into the Canadian OM patient journey, and we have connected with innovative OM treatment researchers as well as explored testing options in Canada for ocular melanoma, also known as uveal melanoma. Additionally, we have partnered with OM patient support groups around the world, such as Cure OM (an initiative of the Melanoma Research Foundation, United States), and Ocumel Ireland and Ocumel UK.

We are inspired by the work being done by these groups, and by the feedback we receive from patients who need better support in their diagnoses of primary and/or metastatic ocular melanoma, to work toward better and more standardized care in all provinces in Canada. We have identified gaps in OM patient care which can vary from centre to centre, and we recognize the need to advocate for patients to receive treatment for their disease, especially when it is metastatic.

In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, we have created a dedicated initiative called Ocumel Canada, which will serve as our platform for increasing education and community around the topic.

Ocumel Canada strives to do the following:

  • Advocate for early detection of ocular melanoma
  • Enable access to early treatment of primary ocular melanoma
  • Work towards a consistent approach to treatment of metastatic ocular melanoma
  • Support patients who have been diagnosed with primary or metastatic ocular melanoma
  • Build a network of support for patients and caregivers

 

Ocumel Canada will work with health care providers and HTA decision-makers across Canada to improve ocular melanoma patient outcomes. We applaud the work being done at the two busiest centres for referrals, and we wish to help extend treatment options to patients in remote areas and to provinces who do not currently participate in the same practices available to OM patients in areas such as Toronto, Ontario. Advocacy for increased patient access to clinical trials, even if in other countries, is also an aim for Ocumel Canada.

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

Click here to read the press release: Launch of OCUMEL CANADA Offers New Hope for Canadians Diagnosed with Rare Ocular Melanoma

Stay tuned for updates on our progress!  And tune in Friday February 15, 2019 to our webinar Ocular Melanoma: Innovative Treatments and Beyond, with Dr. Butler of Princess Margaret Cancer Centre, and Dr. Hamid from The Angeles Clinic and Research Institute, in Los Angeles, California, U.S. This webinar will provide an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler will share their knowledge of current practices and care pathways, identifying the most pressing needs for patients.  They will also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon will share his experience with this rare cancer; Kathy Barnard will facilitate the discussion.

For more information about ocular melanoma and the Ocumel Canada initiative, please feel free to explore the information we have put together for our website at www.ocumelcanada.ca , email ocumelcanada@saveyourskin.ca, or call us at 1-800-460-5832. 

We have created the following pages to provide up-to-date links and resources:

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

Ocumel Canada – 2018/2019 Strategic Plan

https://www.instagram.com/p/BsqaD2xgyf6/

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A Christmas Thank You to Our Supporters

At this time of year, I like to personally thank all of our patients, caregivers, family and friends for their ongoing support. We’ve made great progress this year in improving psycho-social care and treatment options for patients, especially those in the adjuvant setting. We could not have done this without the help and support of our amazing network of patients.

Here are some of our 2018 highlights:

~ Providing knowledge of the treatment landscape and connections with Oncologists, Dermatologists, and other medical professionals

~ Providing patient-reported evidence to the pan-Canadian Oncology Drug Review to push for appropriate, timely and equal access to treatments for patients in the adjuvant setting

~ Meeting with government stakeholders, pharmaceutical companies, and medical professionals to bridge the gap between these groups and the melanoma patient

~ Creating educational Webinars and a YouTube video series

~ Leading the conversation on the need for psycho-social care and support

~ Supporting melanoma survivors to tell their stories and connect with each other

Wishing you and your family a holiday season that is merry and bright.
From Kathy Barnard and Save Your Skin Foundation

Gathering of patients, caregivers and family members in Penticton, BC, Summer 2018

 

 

 
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Introducing “ForPatients” by Roche

We are happy to announce the launch of an informative website about clinical trials by another of our supporting partners.  F. Hoffmann-La Roche Ltd. has put together a website called ForPatients, which includes a search tool for finding clinical trials in various cancer indications, plus other medical conditions such as autoimmune or neurodegenerative disorders.  Anyone can search for clinical trials around the world; it is easy to navigate, and even includes an interactive map showing recruiting clinical trial locations.

ForPatients also contains detailed information about clinical trials in general, and discusses patients’ rights in and after a clinical trial. It also points out where to find published results of any given Roche trials, and it has general care tips for patients plus links to additional support resources.

We applaud Roche for this initiative, and wish patients around the world much success with this valuable new resource.  Click here to check out the new website:

ForPatients.Roche.com

 

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