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News

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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New! NCCN Guide for Patients – Basal Cell Skin Cancer

Save Your Skin Foundation is pleased to endorse and announce the release of the new Guidelines for Patients booklet on Basal Cell Carcinoma (BCC, or Basal Cell Skin Cancer) from the National Comprehensive Cancer Network® (NCCN®).

This informative pdf-downloadable or print version booklet will help patients understand their BCC diagnosis and support them through their surgical and treatment options journey. BCC primarily impacts lighter-skinned, sun-exposed people over age 60, due to the buildup of sun exposure over the years. However, skin cancer has recently become more common in younger people, likely as a result of them spending more time in the sun. In very rare instances untreated BCC can progress significantly and be life-threatening. This new resource provides trustworthy information based on the latest evidence, and is available online at NCCN.org/patientguidelines

NCCN® guidelines are easy to read, free, well illustrated, valuable resources for patients and caregivers, available as online e-booklets, download-able PDF files, or on the “NCCN Guides for Cancer” app for iPhone or Android devices and tablets.  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.

 

To view the full collection of National Comprehensive Cancer Network® Guidelines for Patients on melanoma and non-melanoma skin cancers and related treatments and resources, please view our page here:

NCCN Guidelines for Skin Cancers

 

And for more information about Basal Cell Carcinoma, including our 2020 webinar on the topic, please visit our page here:

About Basal Cell Carcinoma

 

The Patient books are available for free to view and print at NCCN.org/patients or via the NCCN Patient Guides for Cancer App: Virtual Library of NCCN Guidelines® App – Available for iPhone/iPad and Android Smartphone/Tablet

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.

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6th Annual Patients Redefining the Future of Health Care in Canada Summit

6th Annual Patients Redefining the Future of Health Care in Canada Summit
 
Patients Redefining the Future of Health Care in Canada: COVID-19’s Echo Pandemics — the Way Forward
 
Week of November 15, 2021:
  • November 15 Echo Pandemics in Healthcare
  • November 17  Echo Pandemics in Indigenous Health
  • November 18 Echo Pandemics: The Way Forward
  • November 19  Patient Planning Session

 

Click HERE for more information: Agenda, Speakers, and Recording Links

 

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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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1 Week Until the Federal Election: Make Healthcare a Priority

Take Action Before September 20

Send your local federal candidates a letter using our easy, automated website. You can customize the message to address issues important to you.  Having local candidates hear directly from patients is very powerful.

The COVID-19 pandemic has pushed our healthcare system beyond its breaking point, as the system provided care to the overwhelming number of COVID-19 patients, while endeavouring to maintain care for all other patients.

Advocating for change has never been simpler and will only take you a few seconds.

Regardless of ability to pay, or where they live, Canadians should not be reliant on “the postal code lottery.” All Canadians deserve to have health care placed at the center of the commitments of our future government.

Contact your candidates now to have your voice heard! Automatically send a letter to your local candidates that you can personalize as much or as little as you want.

Click HERE to encourage Government to Make Healthcare a Priority

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ASCO 2021 Conference Report by SYSF

The 2021 American Society of Clinical Oncology Annual Meeting took place from June 4-8, 2021. Given the COVID-19 pandemic, the convention was conducted entirely online. This event brings together over thirty thousand oncologists, pharmaceutical representatives, and patient advocates from across the world and across cancer types for five days of networking, learning, and presenting new research. Every year, Save Your Skin Foundation puts together a report of the panels regarding innovative treatments in the melanoma sphere. In this report are detailed recollections of these panels, categorized by topic. All information offered in this report is the intellectual property of the presenter and their team, as cited by the report.

Click here to read the report!

 

Every year, melanoma and uveal melanoma become more widely covered by clinical trials. While the continued innovation of treatment for these cancers is exciting, it means that we were unable to include every presentation and abstract related to melanoma, uveal melanoma, and non-melanoma skin cancers. Therefore, abstracts and presentations that provide updates on safety profiles of past studies and abstracts that do not produce promising clinical results have been excluded. We have also excluded abstracts which, at the time of the meeting, did not have confirmed data.

The informational resources cited in this report are a combination of the transcripts and slides from the ASCO meeting library. All images are courtesy of the author of the respective talk. Any queries may be directed to natalie@saveyourskin.ca

If you are interested in more information from the ASCO 2021 annual meeting, Save Your Skin Foundations is pleased to offer a Post-ASCO 2021 Update with Dr Omid Hamid video concentrated on melanoma, non-melanoma skin cancers, and ocular melanoma. Click HERE to view the recording on youTube

 

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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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Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed.  Thanks to All for their feedback and support.

Stay tuned for the resulting report. 

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Train Like the Canucks

We are thrilled to be partnering with Vancouver Canucks’ JT Miller and his wife Natalie this year to fundraise during Move for Melanoma.

Train Like the Canucks is a team that can be joined by anyone. People who join the team are challenged to complete a workout designed by JT Miller himself with the help of his trainer, which emulates a typical workout performed by the Vancouver Canucks hockey players.

All who join the team will be entered into a draw to win a signed Vancouver Canucks’ jersey and other prizes.

Funds raised by Train Like the Canucks will go to Save Your Skin Foundation, the only organization in Canada that supports skin cancer patients financially when they need it most, in the form of treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

To learn more about JT Miller and his wife’s connection to Save Your Skin Foundation, watch the short video below.

Join Train Like the Canucks

 

Q&A

 

How can I join team Train Like the Canucks? 

To join, start by clicking here to register. On the registration page, select “Train Like the Canucks” from the list of activities. If you’re a new user, create an account. If you’re a returning participant, login to your existing account. *If you’ve already registered for another team for this year’s event, you will have to join with a different account using a different email address.* There is a $25 registration fee to join the Train Like the Canucks team.

Does it cost money to be part of Train Like the Canucks?

There is a $25 fee to be part of Train Like the Canucks. All proceeds will go directly to supporting skin cancer patients in need. You are also encouraged to make a donation and to invite your friends and family to support the cause. We thank you in advance for your support.

When will I receive the Canucks workout plan?

Once you are registered with Train Like the Canucks, you will receive the  workout plan by email within a couple of weeks. If you don’t receive it within two weeks, please look in your spam folder or contact marianne@saveyourskin.ca.

I tried joining Train Like the Canucks but I got an error message saying I’m already registered. What should I do? 

Unfortunately, you cannot be part of more than one team with the same account. That means that if you’ve already registered for Move for Melanoma this year, you’ll have to create a separate account to join Train Like the Canucks. To do so, you will need to use a different email address. If you don’t have two email addresses and want to join, please email marianne@saveyourskin.ca to make arrangements.

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