Ocumel Canada

Embracing Connections: A Virtual Gathering for Ocumel Canada

Join us on July 12, 2023, at 5pm PST/8pm EST for a special virtual get-together hosted by Ocumel Canada. This unique event aims to create a safe and supportive space that fosters kindness and understanding.

Whether you’re a patient, caregiver, or anyone affected by Ocular/Uveal Melanoma, we invite you to come together for an hour-long call filled with inspiration and connection. Share your experiences, find solace in the company of others who understand, and discover the power of a compassionate community.

During this virtual gathering, we’ll provide a platform for open dialogue, encouraging participants to discuss whatever is on their minds. Together, we can uplift and empower one another as we navigate the complexities of living with Ocular/Uveal Melanoma.

Don’t miss this opportunity to connect with like-minded individuals, exchange stories, and find strength in shared experiences. Register now and mark your calendar for an evening of support, resilience, and hope. Let us stand united in the face of Ocular/Uveal Melanoma.

Please let me know your thoughts! Once you do, our team can begin promoting this on our website & social pages. On Monday we will brainstorm how this call should be ran but if you have any ideas please feel free to let me know.

REGISTER HERE!

Ocular Melanoma Patient & Caregiver Symposium

Thank you so much to all who attended the FIRST Canadian Ocular Melanoma Patient & Caregiver Symposium!

If you weren’t able to join us live over the weekend, you can watch the recording of the symposium on our Youtube channel.

Watch the recording of Day 1

Watch the recording of Day 2

Date:
April 15 & 16, 2023

Start Time:
Day 1 – Starts: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

The Symposium is brought to you by Ocumel Canada & will consist of 4 key presenters. This symposium will go over 7 virtual sessions over 2 days and will provide up-todate information on primary and metastatic disease, treatment options, testing, and the psychosocial experience of patients. Patients living with primary and metastatic ocular melanoma will also share their experiences.

Can’t attend that weekend? Register anyway and the recordings will be sent to you as soon as they are available.

Our Key Presenters:

Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre
Dr. Hatem Krema, Director, Ocular Oncology, Princess Margaret Cancer Centre/UHN
Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program
Monica Tan, Social Worker, Telus Health/ Private Practice

Click here to download our one-pager

PROGRAM & ADDITIONAL INFORMATION

Symposium Program

Program

Start: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

Welcome – Nigel Deacon and Kathy Barnard (15 min)
Session 1 – Patient Story – Sherry Agriesti (20 min)
Session 2 – Presentation: Primary disease – Dr. Weis (45 min)
Break (5 min)
Session 3 – Patient Story – Mark Jennings (20 min)
Dr. Krema – Presentation on the value of testing for patients and physicians in making treatment decisions (45 min) followed by a 15 min Q&A
Castle (Dr. Alsina) and Impact Genetics (Jamie Jessens) – Presentation on testing (value and availability) and discussion around testing tools – (30 min)

End: 3pm EST | 12pm PST | 1pm MST | 4:30pm NST | 4pm AST

DAY 2

Start: 12pm EST | 9am PST | 10am MST | 1:30pm NST | 1pm AST

Welcome – Nigel Deacon and Kathy Barnard (5 min)
Session 1 – Patient Story – Candyce Charles (20 min)
Session 2 – Presentation on metastatic disease – Dr. Butler (45 min)
Break (5 min)
Session 3 – Presentation: Psychosocial Experience of the Patient (30 min) followed by a question period (20 mins)
Session 4 – Discussion: What Patients and Caregivers Need from Ocumel Canada Moving Forward – What Needs are Not Being Addressed – Nigel Deacon and Kathy Barnard (30 min)
Closing – Nigel Deacon and Kathy Barnard (5 min)

End: 3pm EST | 12pm PST | 1pm MST | 4:30pm NST | 4pm AST

About Ocumel Canada

Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular melanoma (OM). Ocumel Canada is in close collaboration with a global Medical Advisory Board and partner patient representation organizations with the endeavour to build on international best practices to improve patient outcomes for Canadians touched by this disease.

This rare cancer is a challenge in so many ways. The small number of diagnoses in Canada does make it difficult for the mainstream Cancer Agencies to provide adequate services. In some provinces and territories, there are no services at all.

Click here to learn more

Ocular Melanoma Patient & Caregiver Symposium

Happening virtually over two days, April 15 & 16, 2023, the first Canadian OM Patient & Caregiver Symposium will include presentations by Canada’s leading experts in Ocular Oncology and patients living with Primary and Metastatic Ocular Melanoma.

Stay tuned for more details and registration!

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

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

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/

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

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:

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

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!

Embracing Connections: A Virtual Gathering for Ocumel Canada

Ocular Melanoma Patient & Caregiver Symposium