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Ocumel Canada

Continuing Ocular Melanoma Awareness all year round

November is Ocular Melanoma Awareness month – and it is the time of year we at Ocumel Canada bring awareness to the importance of dilated eye exams for the detection of ocular melanoma.

We will take this opportunity though, to continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Sheila and Leanne’s stories:

 

 

 

 

 

 

 

 

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists! Please click here to learn more about them and how they have supported the #EyeGetDilated campaign this year:

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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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!

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Move for Melanoma After Party

Join the funnest part of MOVE FOR MELANOMA this year by joining our VIRTUAL AFTER PARTY! Celebrate with the Save Your Skin team, donors and fellow participants! Everyone is welcome!

The After Party will take place on Sunday, September 26th, 2021 at 5pm PT | 8pm ET on a platform called Topia. If you attended our virtual Giving Hope Gala in the spring, then you will know that Topia is a fun, 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 with other attendees like you would in person with the platform’s spatial video, while also exploring a world full of surprises.

In the meantime, click here to share, participate in, and stay up to date on the progress of our 3rd annual Move for Melanoma event!

 

 

 

 

 

 

 

 

 

What you’ll need:

  • A computer or a tablet – You’ll need a Windows or Mac desktop or laptop computer equipped with a camera, or a Android Tablet or Ipad. For the best experience on Android tablets please use “desktop mode” in Chrome. 
  • A supported web browser – Topia works best on Google Chrome, Edge, and Brave on desktop and laptop computers. For best results we recommend using one of these three browsers.
  • Headphones – There is ambient sound in Topia which is personal to you. Headphones ensure a great experience. Without headphones, higher volume can result in feedback for other guests or mixed sounds which isn’t fun for anyone.

 

How to join:

  • On September 26th at 5pm PT | 8pm ET, click on this link to join: https://topia.io/save-your-skin-foundation. Don’t bother trying to go on beforehand as it will not be available.
  • When you first go in, you will be asked to choose a display name.
  • Your browser will ask for permission to use your camera and audio. If you have Zoom/Teams/Skype open you won’t be able to do this, so please make sure they’re closed first.

 

What to do once you’re in:

  • You can move around the space using either mouse clicks or your arrow cursor buttons.
  • You hear and see people better the closer you are to their little “Topi,” or person.
  • If you walk away from people you hear and see them less. People “fade out” as they get farther away.
  • As you explore, notice when your cursor turns into a pointer. This indicates that the object your mouse is on has a function. Click to interact with the object. 
  • You can mute yourself or others by clicking the speaker icon in the top right corner of your video or theirs. When muted the speaker will turn from black to red.
  • To send a private message to someone at the gala, click on the envelope symbol on their video. If someone sends you a private message, the envelope symbol to the left of your screen will become red. 

 

For complete instructions on how to use Topia and join the party, click here!

 

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Ocumel Canada News!

The Ocumel Canada team has been very busy working on initiatives and strategies to help bring awareness to Ocular Melanoma (OM) and improve care pathways for patients across Canada.  In the spring we conducted a patient/caregiver survey with the intent to gather current information about primary and metastatic OM patient experiences across the country, from diagnosis and genetic testing options, to varying methods of treatment.

We deeply appreciate respondents’ time in filling out this survey, and we have now released a comprehensive report detailing their feedback.

Please click here to view the full report.  This data helps inform our work, and we share it with the treating physicians who handle our cases every day.  We work with treaters and treatment providers to create an ongoing and open dialogue which we believe will serve patients and their families in the most positive way.  We welcome any questions or feedback – please email ocumelcanada@saveyourskin.ca to get in touch!

And in other Ocumel Canada news…

 

We have expanded our participation in the annual SYSF event called “Move for Melanoma” – an activity challenge across Canada to raise funds for melanoma, non-melanoma skin cancer and ocular melanoma patients.  For the last two years OM patients and supporters have created their own teams on the Move for Melanoma platform, and they are welcome to do so again this year! But for those who may be just meeting us for the first time, or who might simply like to support Ocumel Canada with a donation, we have created Team Ocumel Canadaclick here to check it out.

Save Your Skin Foundation is the only organization in Canada that supports skin cancer and ocular melanoma patients financially when they need it most. All the money raised through donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

To join the movement, our friend Laurence has shared his story and is a spokesperson and feature patient for this event.  Laurence has been fighting a battle with Ocular Melanoma for almost four years. Thanks to our Move For Melanoma fundraisers and donors, Save Your Skin Foundation can continue helping Laurence travel to receive a promising new treatment. Read Laurence’s story HERE.

Download these posters for print, and be ready to  register for Move for Melanoma 2021!

 

 

Please note – these resources are all available in French – email us at marianne@saveyourskin.ca for French.

 

ALSO!  Check out our new Ocumel Canada merchandise

Get your shirt today to help support Team Ocumel Canada and the work we do, supporting OM patients across Canada:

           

 

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Laurence’s Story

Vancouver, BC

It was around 1pm and my partner and I were playing with monkeys on a beach in Thailand. That’s the moment my life changed forever.

Out of nowhere, as if someone had just pulled a curtain down over my right eye, this “black line” fell about a quarter of the way down over top of my vision. It was super strange and I immediately asked my partner if there was something she could see in there, but she said no. Apparently it looked fine. I had an instant thought that, maybe because we had been doing a lot of scuba diving this trip, perhaps a blood vessel or muscle became damaged due to the pressure under water.

A week later, once finally arriving back home, and this black line still very present, I went to a walk-in clinic. And from that first doctor’s visit, it took another 6 or 7 days and 4 more doctor’s appointments before I finally heard the end result. That’s also when I heard the scariest 3 words ever said to me in my life: You Have Cancer.  Ocular Melanoma.

Since I can remember, I’ve always had such an appreciation for the pure natural beauty that this world is, and what it means to be able to reflect on that miracle alone. To be able to see one’s place in this universe, on this planet, in this life… to simply be aware of what it is to be alive.

I could never get enough of it!

Growing up on Vancouver Island surrounded by endless natural beauty, and having the freedom to grow and learn in that space, was a priceless experience in shaping this view and appreciation I had developed early on. It inspired me as an artist, a musician, and kept me curious about expanding my world infinitely. It gave me the inspiration to pursue those dreams and passions and to let Experiences be my guide. When I graduated from high school, I moved to Vancouver with my band to become rock stars and follow the path of the arts.

Since that move 18 years ago, I have witnessed and experienced my dreams manifest and become reality so many times over, in so many different ways.

It was the reason I met the love of my life.

It was also the reason I found martial arts.

Bujinkan Budo Taijutsu, to be precise. The art of the Ninja. It’s an ancient Japanese art, comprised of 9 different martial art schools of the past and refined into one discipline. This art has been studied and passed down through centuries and, through the time of feudal Japan, the Ninja became known as assassins used to take out leaders of war to alter or prevent battles from ever taking place. But once I began to study the true art as passed down through the ages, and separated myself from what I thought I knew from TV and movies, a whole new appreciation and way of experiencing the world was opened to me.

Ninja were in reality farmers, peasants, and simple people not wanting to live under the harsh rule demanded of the time. Their outlook on life was that of Peace, Love, and Compassion for all things. For Life. But, as well, they had a very different view to fighting and conflict.

What mattered was Life and Death, not Winning and Losing. Fighting to win serves only the ego. Fighting to survive something that is intent on taking your life, is necessity. Whatever it takes to wake up in your own bed, or to protect those that are worth your own life, are the only reasons to engage in conflict or battle. Fighting, or preventing a fight to literally survive, is the only reason to ever engage.

I’ve studied this concept for 16+ years, traveled multiple times to Japan to study with my sensei and the Grand Master of the art. I’ve passed the one and only test given in the art, which is for the 5th degree black belt.

The test goes like this: you kneel on the floor in seiza (feet crossed under your butt, back straight, hands on your thighs, relaxed). The Grand Master stands behind you, holding a sword, and whenever he feels ready (meaning 1 second or 10 minutes, any length of time he wants), he will project at you for a split second the most intense feeling of “Death”, and then proceed to strike straight down on top of your head with the sword. Your test is to sense this intense feeling of “Death”, and to roll out of the way avoiding the sword. That is it. You need to know when your life is truly in danger, and then make the right decision. In modern times, a Boken (wooden katana) is used for this test, but originally, it was done using a real katana. Failure to survive was not an option. And yes, I passed my test the first time 😉!

So what do I do now? There is a very clear opponent trying to kill me, its intention is very clear. And I can’t roll out of the way. No matter which way I seem to move, I can’t escape. And I can’t even see my foe to face it eye to eye. In the past 3.5 years fighting, I’ve had 2 major surgeries, 3 separate rounds of radiation, changed my diet and tried immunotherapy, but nothing has worked thus far. Ocular melanoma, once inside the body, is very rare and can be extremely difficult to treat.

But just this April 2021, my life was changed again! I was introduced to Kathy Barnard of Save Your Skin Foundation. I was made aware of the foundation through my doctors at BC Cancer, who said it couldn’t hurt to give her a call.

It was one of the most important phone calls I’ve ever had the pleasure to make. A brand new treatment for ocular melanoma had just become available this year, but was going to require travel once a week from Vancouver to Edmonton. And not just once but for 12 treatments.

That would mean 12 plane tickets, 12 hotel nights, taxi’s to and from the hospital and airports… and unfortunately, I was responsible for all the expenses related to getting to my appointments. That is until I spoke to Kathy.

Save Your Skin Foundation has become my “secret weapon”. Now I have the ability and support to be able to fight back. Not to win this fight, but to ultimately have the best chance to survive.

Kathleen Barnard is a cancer survivor from 2003. In fact she’s a miracle. Not only for having beaten her cancer, but for creating this amazing foundation for people suffering from all forms of melanoma. She and her foundation have been taking care of All of the expenses I mentioned in order to get me where I need to be, and to eliminate the extra stress and pressure from the financial burden this would put on anyone.

It’s one of those scenarios you find yourself giving yourself a pinch every once in a while, just to make sure it’s not a dream. Well, I can tell you from the bottom of my heart that it’s no dream. Just a dream turned into reality!

To everyone at Save Your Skin Foundation, to all the donators and supporters, to anyone helping in the fight against All cancers, I thank you!

 

 

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Move for Melanoma 2020 – It’s a Wrap!

 

To everyone who participated in Move for Melanoma 2020 by raising awareness and funds in their communities, a huge thank you! We couldn’t have done it without you!


Over 100 participants
and 24 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.

We’d 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!
We reached 120% of our (doubled) fundraising goal! You can read our full post-event press release HERE.

To all participants and donors, 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 when they need it most. Every single dollar raised through your donations will go directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Thanks to all our participants who sent us pictures of themselves and their teammates taking part in Move for Melanoma, we were able to create a beautiful Wrap video of the event. We encourage you to take 2 minutes to complete our post-event PARTICIPANT SURVEY to help us improve for next year!

 

Watch our 2020 Wrap video!

 

 

Thank you to our Sponsors:

 

We’d like to acknowledge the many businesses that have stepped up to support our event this year. They have generously donated prizes for our top fundraisers and made monetary contributions to the event.
Please show them your support!

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#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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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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