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Ocumel Canada

November is Ocular Melanoma Awareness Month

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

Through our work, we will 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 Brianne’s story below:

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists!

 

 

 

 

 

 

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

OcumelCanada.ca

About Ocular Melanoma

Helpful Links

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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Upcoming Webinar: Prognostic Testing and What It Means to Ocular Melanoma Patients

Join us for a free webinar on Wednesday, September 14 at 5pm PST | 8pm EST.

In this webinar, Katherina Alsina, PhD, Castle BioSciences, Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program, and Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, will help patients understand prognostic testing when diagnosed with Ocular Melanoma. They will also discuss options for HCPs for prognostic testing, what it can mean to patients and how it can affect treatment decisions. The presentations will be followed by a live Q&A session.
Click here to register
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Big steps forward in OM treatment & support in Canada

Ocumel Canada in the News

As Ocumel Canada continues to support and advocate for patients touched by ocular melanoma (OM), we are happy to see a monumental step forward in the treatment of this disease across Canada. Last week, Health Canada granted a notice of compliance (NOC) for Kimmtrak® (tebentafusp) for the treatment of metastatic ocular melanoma, closely following approvals in the United States, Australia, and the European Union.

Many patients with this rare cancer have been needing to travel from their home provinces coast to coast – to Toronto – for treatment, which is not an ideal situation for any patient, as they need to be close to their home and support system for ease and comfort as they fight this disease. Ocumel Canada is happy to report that in partnership with treating Physicians and Partners we are making progress in this situation and getting patients treated closer to home.

Global News spoke to two patients in this interview, click HERE to watch the recording.

Ocumel Canada and Save Your Skin Foundation applaud Health Canada’s approval of Kimmtrak® (tebentafusp) for the treatment of unresectable or metastatic uveal melanoma in HLA-A*02:01-positive adult patients. We now hope that every province and territory will take swift steps to list this drug on their public formularies in order to make this therapy available to patients across Canada.

We thank all patients and their caregivers who shared their experience and feedback to this process. To learn more about this immunotherapy treatment and the approval, read our full press release by clicking HERE.

To add to all of this great news – we wish to invite all Canadian OM patients or caregivers to join the VISION Registry, an online research database created by our friends at CureOM, Melanoma Research Foundation.

The database will allow researchers to better understand ocular melanoma (OM) as well as the needs and preferences of patients. For example, researchers can look at the socio-demographics, genetics, accompanying conditions, and treatments of patients from around the world and any potential links to OM that might exist.

The research will also look at patients’ experience from onset of symptoms to confirmed diagnosis and how that can be improved.

For the VISION Registry to be successful we need as many patients as possible to securely share their data. There is power in numbers!  Please register and add your information to the registry. We are eager to learn together to advance knowledge and eventually find a cure for OM.

(At this time, the registry is available in English only, but we are working on a French-Canadian translation, stay tuned!)

Click here to learn more and join the Vision Registry: https://melanoma.org/visionregistry/

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Check out our national and international Melanoma Awareness Month initiatives!

May is Melanoma and Skin Cancer Awareness Month

This May, Save Your Skin Foundation and Ocumel Canada are running local, national and international campaigns to raise awareness on the importance of prevention and early detection of skin cancers. See a full list of our Melanoma Skin Cancer Month and Ocular Melanoma awareness initiatives HERE.

For the third year in a row, Save your Skin Foundation’s proclamation initiative has invited Canadian municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations. Over 38 municipalities across 8 provinces have issued signed Proclamations to proclaim the month of May 2022 ‘Melanoma and Skin Cancer Awareness Month’.  Look for your city on the list here

Members of our SYSF team have also had the honour to present to the Mayors and Councils of a dozen municipalities across the country to share their experiences as patients and spread the message of sun safety and early detection of skin cancer.

Skin check awareness

Save Your Skin Foundation is part of the Global Melanoma Coalition, a group of 43 organizations from 28 different countries bringing the patient voice to the melanoma space. The below videos have been created in collaboration with the Global Coalition.

It’s funny what you can miss when you’re not looking for it. Watch the Global Coalition video and learn the importance of checking your skin for melanoma and skin cancer:

Skin self-exam tutorial

This video covers the ABCD&E warning signs of melanoma and skin cancer, and the seven steps for checking the body. Pauses between the seven steps have been included in the film, so you can simply take your phone or tablet into a bathroom, hit play, and follow the instructions in real time:

 

#EyePatchDay

Having regular eye examinations could save your life! Routine eye tests can lead to early detection of ocular melanoma and many other health issues. However, statistics show that we are not visiting the optometrist as frequently as we should.

Make a commitment to booking an eye exam this month!

Visit OcumelCanada.ca to learn more

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Looking Back at 2021

Our 2021 Annual Reports are out now!

It’s always a rewarding experience to look back on the past year and see how much the Foundation has accomplished.

Despite another year amid the pandemic, Save Your Skin Foundation and Ocumel Canada have continued to grow partnerships, operations and services, and reach more people touched by melanoma, non-melanoma skin cancer and ocular melanoma.

We are extremely grateful to our community of patients, caregivers, healthcare providers and sponsors who continue to inspire and support us in our endeavors.

Click on the images below to view the reports:

 

 

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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 

Read more

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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