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melanoma patient support

#EyeGetDilated – Awareness Campaign for Ocular Melanoma – November 2019

The 4th annual #EyeGetDilated campaign kicks off November 1st!

Throughout the month, CURE OM, an initiative of Melanoma Research Foundation in the United States, will be utilizing social media, guest blogs, videos and more to promote and educate about the importance of eye health and encourage everyone to include a dilated eye exam in their annual wellness routine.

Early detection is incredibly important for many eye diseases, including ocular melanoma.

To expand their reach internationally, CureOM has invited Ocumel Canada to partner with them for this year’s awareness campaign! If you’d like to participate, please re-post information from the CURE OM and MRF, and Ocumel Canada, social media channels during the month to spread the news about the importance of dilated eye exams, and share your own messages too! You can also request our free “Missing a Check?” postcards to take to your local doctors to include in their annual wellness reminders or click here to download a PDF copy. Suggested places to hand out postcards/flyers (with permission) include your primary care/family physician, optometrist and dermatologist. Email us to find out more!

To read more about the role of a Dilated Eye Exam in early detection of Ocular Melanoma, please click here to read this blog by Carol L. Shields, MD:

Get your eyes dilated once a year for life. Detection of melanoma when it is small is important as life prognosis is far better. It should be known that about 10% of Caucasians in the United States have a choroidal nevus and this could be a precursor to melanoma. Any patient who has different colored iris should be checked twice yearly, as this too could be a precursor to melanoma. If there is a family history of other cancers like renal cell carcinoma, mesothelioma, or others, you should have your eyes checked as uveal melanoma can occur also with these other malignancies under the umbrella syndrome called BAP 1 cancer predisposition syndrome.  Click here to read the full article.

And click here to read more about Ocumel Canada and resources we offer across Canada: About Ocumel Canada

 

 

 

 

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Huge Thank You to all Move for Melanoma supporters!

To all those who participated in Move for Melanoma by raising awareness and funds in their communities, a huge thank you! We couldn’t have done it without you! We are inspired by all of the creative activities that SYSF supporters did in the Move for Melanoma activity challenge throughout the weekend of September 13-16, 2019.

We’d also like to thank all those who supported Move for Melanoma by making a donation, sponsoring an event or spreading the word. Thanks to you, the event was a monumental success! Your dedication to the fight against skin cancer will help Save Your Skin Foundation continue to support Canadians living with non-melanoma skin cancer, melanoma and ocular melanoma. Know that you have made a difference!

Thank you to our Sponsors:
Bristol-Myers Squibb Canada  |  Beach City Crossfit  |  HollisWealth  |  Madlab School of Fitness  |  AXED Throwing Club  |  Lululemon  |  Code Sports

 

TOTAL FUNDS RAISED THIS WEEKEND
Want to know how it went? Watch this video to find out!

Thanks to the many participants who sent us pictures of themselves and their teammates taking part in Move for Melanoma, we were able to create a beautiful recap video of the event. The BMS Cycling Team completed a 600 kilometre ride over the weekend – watch SYSF Founder Kathy Barnard roll across the finish line with them!

 

 

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One Week Until Move for Melanoma!

All across Canada teams of runners, bikers, hikers, and even laser tag enthusiasts are all preparing to MOVE FOR MELANOMA next weekend!

In our weekend-long fund-and-awareness-raising activity challenge Save Your Skin supporters will be all hands on deck to make this event great.

Friday September 13 kicks off Move for Melanoma with a team of cyclists biking 600 kilometres in the Montreal area, wrapping up the ride on Monday September 16 in conjunction with two shorter rides, 85 kms and 55 kms, in which our very own Kathy Barnard will be biking with her husband alongside the BMS team.

On the Saturday and Sunday in cities all over, participants will do their favourite activities in the name of melanoma patient support – in addition to the run and bike routes people have planned, we have crossfit teams, kayaking, city tour walking, and axe-throwing!

Haven’t yet registered? 

CLICK HERE to view the event website and join a team, create a team, or donate today!

Click on any image below to see what these teams are doing:

             

             

 

Save Your Skin Foundation notes the unique accessibility of the Challenge as an important part of campaign. “Skin cancer can happen to anyone. It’s caused by exposure to ultraviolet (UV) rays from sunlight or tanning beds. We therefore wanted a campaign that was accessible to anyone”, explains Kathleen Barnard, President and Founder, Save Your Skin Foundation and stage four melanoma survivor. “People have come up with very creative ideas that work within their Challenge comfort zones. One team is doing CrossFit, another is doing an axe-throwing contest and I’ll be cycling 55 kilometres in Montreal on Monday!”

Email us to let us know what you’re doing for MOVE FOR MELANOMA! 

Stay tuned for more photos and excitement from the events next weekend.  We will also post thanks to our generous sponsors, including:

Bristol-Meyers Squibb Canada, Montreal, Quebec

AXED Throwing Club, Thornbury, Ontario

Beach City CrossFit, Penticton, BC

MadLab School of Fitness, Vancouver, BC

And many more!

 

 

 

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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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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’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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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

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SYSF Teams up with La Roche-Posay Canada at OneWalk Toronto 2018

Last weekend I went for a 15 kilometre walk— as in, 15 kilometres all at once. Two short years ago I could not have done that, being in recovery from surgeries and treatment for advanced melanoma, I was not physically or psychologically capable of such a feat. This year however, I was grateful to walk 15 kilometres (in 3.25 hours!) alongside a team dedicated to raising funds for melanoma research at Princess Margaret Cancer Centre in Toronto.

I was motivated to join this team this past spring, when our new sponsor La Roche-Posay Canada told me they were doing the OneWalk Toronto 2018, and suggested perhaps I could join them as a representative of melanoma survivors and Save Your Skin Foundation (SYSF).  I was thrilled but also anxious about this idea – could I really do it?

We each had a fund-raising goal and friendly instructions to meet at Nathan Phillips Square in downtown Toronto on Saturday September 8, 2018 at 7:30am. Being as I was a guest on the team I didn’t have to do any of the heavy lifting, but I was there early enough to witness the hard-working team at La Roche-Posay (LRP) setting up, distributing sunscreen samples, and greeting walkers with encouraging smiles and high-fives.

I was thrilled to meet some of the folks I had been speaking or emailing with for months – it was so great to put faces with names. I had done events with LRP in the past, but this was a large local project in which SYSF and I both feel quite invested.

La Roche-Posay, with their sunscreen line, is a huge proponent of melanoma prevention, and the partnership we were demonstrating at the OneWalk was that of awareness and education. LRP is also a sponsor of the OneWalk Toronto event and were obviously enthusiastic about being able to bring awareness to sun safety and skin cancer prevention to all participants. They had a shade tent and sunscreen samples and tester bar, as well as their new “My UV Patch.”

My initiation into the team that morning was the presentation of my name tag and lanyard for the walk. I did not expect the rush of emotion when my new friend put my lanyard on me – it was a special coloured one, reserved for the cancer survivors of the crowd.

Not having participated in the OneWalk before, I was unexpectedly dazzled by the supportive community and encouragement to cancer patients and survivors at the event. Everyone everywhere was respectful of and very loving to those of us with the rainbow lanyards.

At one point during the opening ceremonies, the MC asked everyone with a rainbow lanyard to remain standing, and everyone else to kneel on one knee. Our team happened to be at the front near the stage, so when this happened I was glad I had my back to most of the hundreds of people in the square all around me – my tears were flowing at this point – I was so overwhelmed I almost got down on one knee too. I was incredibly humbled by the honour I felt by this moment of silence in cancer survivors’ memory and support.

Team LRP raised over $20 000 for Princess Margaret Cancer Centre, a decent portion of the total raised $4.7 million by 3200 walkers from all over Canada. I could clearly see why the event is so successful; it is very well organized, and cancer patient care is the obvious topic at hand. Princess Margaret Cancer Centre staff and supporters made speeches in the opening ceremonies, and a couple of the Research Team Leads also got up on stage to address the crowd. Overall, it was a fabulous representation of this centre, which happens to be one of the top five in the world for cancer care research and innovation.

Even one of our Medical Oncologist friends and SYSF Medical Advisory Board members from PMH was present – he had done the Friday evening NightWalk – but he came after lunch Saturday to meet with the La Roche-Posay team. I am thrilled to report I got a hug from him; I couldn’t stop more tears when he thanked me for participating in the event. It’s not very often I get to thank him in person for all that the HE does for melanoma patients like me.

I’d like to extend huge thanks to my new friends from Team La Roche-Posay Canada, not only for their warm welcome and hard work at OneWalk Toronto 2018, but also for their dedication to skin cancer prevention and awareness all year-round. I look forward to helping facilitate the initiatives Save Your Skin Foundation and La Roche-Posay will be working on together – stay tuned for updates!

Team LRP with Toronto Mayor John Tory

Team LRP at the Finish!

 

By Natalie Richardson,

Metastatic melanoma survivor and advocate, Managing Director, Save Your Skin Foundation

 

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SYSF Survey! Melanoma Treatments for Adjuvant Patients

Save Your Skin has the opportunity to submit patient feedback to the pCODR process for the two treatments coming to the Adjuvant setting for Melanoma patients in Canada.  To learn more about the drug approval process and our involvement as a patient representation group, please visit our page: “Let’s Chat: Patient Submissions and Discussion

We believe the ability of stage I, II, and II melanoma patients to receive innovative treatments is key to survival, and to the reduction of progression to stage IV disease.

To inform our upcoming submission, we have created a short survey and request that any and all patients touched by melanoma complete the survey to have their voices heard.  This survey is open globally, to all stage melanoma patients at any point in their journey; but we request that IF you are a metastatic patient taking the survey, but were diagnosed at stage 1, 2 or 3 could you please take some time to remember back to those days and fill in what you can in the survey pertaining to those times.  Were you offered a treatment, were you advised to “wait and watch” and what were those times like for you and your family.

This anonymous survey is now closed.  We thank all who shared their time and experience in responding to the survey.  Stay tuned for news of our completed submission to pCODR and INESSS.

If you have any questions or feedback about this topic or the survey itself, please email info@saveyourskin.ca

Thank you! 

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