Martine Elias, Myeloma Canada's
Executive Director
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"This month’s editorial has a personal focus on a family Myeloma Canada has helped as they were coming from the Ukraine to settle in Toronto. It has been a bit over a year since the war broke out in the Ukraine, and almost one year to the date that our family arrived in Toronto.
The reason I’m sharing this with you this month is to highlight the importance of advocating for yourself, in every situation. Whether you are a recent immigrant to Canada, or have lived here your entire life, you need to do what it takes to get what you need and want.
If that means reaching out to others who can help, who may have more connections or experience than you, then “just do it”! Make yourself seen and heard because no one wants something more for you than you do for yourself. "
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A National Strategy for Drugs for Rare Diseases
Yesterday, the Honourable Jean-Yves Duclos, Minister of Health, announced an investment of up to $1.5 billion over three years to support the first-ever National Strategy for Drugs for Rare Diseases. The Strategy, which is the result of feedback from extensive consultation with over 650 individuals and organizations, will help to increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada.
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I - Update on our Multiple Myeloma Awareness Month advocacy campaign!
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You’re getting us there!
Our goal is to achieve nationwide recognition of Myeloma Awareness Month in as many municipalities as possible and in every province and territory across Canada, and it’s going strong.
As of March 21st, 9 provinces and 34 municipalities have confirmed their participation in in this year’s Multiple Myeloma Awareness Month campaign!
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It’s not over yet! Stay tuned for a complete update in April! |
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II - Have your voice heard!
Caring Virtually
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As a result of the COVID-19 pandemic, the use of virtual care increased dramatically to provide a safe alternative for patients to receive healthcare services. This includes medical appointments for a wide range of medical needs. |
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CONECTed (Collective Oncology Network for Exchange, Cancer care innovation, Treatment access and Education), a network of national oncology patient organizations in Canada, is undertaking this study to:
- understand cancer patient experiences using virtual care during the COVID-19 pandemic;
- develop recommendations that will help to ensure adoption and adaptation of equitable, equal, consistent, and comprehensive virtual care best practices across Canada.
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Who can participate? Cancer patients who needed to use virtual care during the COVID-19 pandemic as part of their cancer care.
Format: One-on-one, phone-based interview (30 minutes to 1 hour). Interviews are offered in both English and French.
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An honorarium will be provided.
Phone: +1 647-948-9708
Toll-free: 1-877-842-0637
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What's new at Myeloma Canada |
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I - JUST LAUNCHED! Myeloma Canada's Giving Campaign
for Multiple Myeloma Awareness Month 2023
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11 a day. 77 a week. 330 a month. 4,015 a year.
That's how many Canadians were diagnosed with myeloma in 2022, as reported by the Canadian Cancer Society, and the number is rising steadily. We’re talking about our spouse or partner, a parent, child, sibling, loved ones, friends, and colleagues. There are countless Canadians who may not receive their diagnosis for months or sometimes even years.
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Together, let’s do all we can to stop this complicated cancer
from cutting short the lives of those we love.
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Your support is invaluable.
Please give as generously as you can.
Precious lives are depending on it.
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II - NEW! Myeloma Canada (virtual) support group for Canadian veterans/ex-military and caregivers impacted by myeloma. |
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Myeloma Canada's newest virtual support group offers veterans/ex-military and their caregivers faced with the challenges of living with myeloma, a safe space in which to connect and exchange with others also impacted by the disease.
This virtual support group eliminates geographical and language barriers (thanks to the Facebook translate button). And because it is a closed group, members must request to join the group in order to gain access. Information shared is not visible to the general public.
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This virtual support group is monitored and led by Myeloma Canada’s Michelle Oana, Director of Development and Community Relations, and Aidan Robertson, Health Policy & Advocacy Assistant.
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III - Join us at our Regional Conference in Western Canada!
For people living with myeloma, caregivers, family members, friends and healthcare professionals.
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When?
Friday, March 31, 2023
8:00 am - 5:00 pm
Where?
Hotel Clique
24 Aero Cres NE
Calgary (AB)
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REGISTRATION CLOSES MARCH 24, 2023 AT MIDNIGHT!
(Virtual attendance is also possible)
Looking forward to seeing you there!
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Questions or need help registering for the Conference?
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IV - Spring is in the air: Gear up and let's bike to beat myeloma! |
Myeloma Canada’s exciting national fundraising event, The Myeloma Canada Ride is celebrating its 2nd year in 7 scenic Canadian locations (with a Virtual Ride option) starting this coming May.
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Each city will have 2 different routes to choose from, a shorter and more leisurely 30 - 40 km route, or a longer and more challenging 70 - 90 km option. Whichever route you choose, you’ll have a heart-healthy blast raising critical funds to help improve – and save – the lives of thousands of Canadians impacted by myeloma.
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Click on the links below for information on the Ride closest to you.
*Note: In-person Rides are designed for participants aged 18+.
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No Ride? No problem! You can still participate by registering for the Virtual Ride option and plan your own personal Ride challenge in your community!
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V - Looking for a clinical trial? |
Using our Personal Clinical Trial Finder, you can find a clinical trial that is right for you in just a few clicks. By doing a search based on your postal code, you will get a list of ongoing studies in your area. You can print this list and discuss this treatment option with your healthcare team.
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Do you live in Quebec and would prefer to talk to someone?
The Personalized Clinical Trial Support Service is a new, bilingual, and free service designed to offer compassionate and user-friendly support to patients and caregivers in Quebec, and simplified access to sometimes complex information.
To make a cost-free request to the Personalized Support Service, or to learn more about this pilot project, contact Clinical Trials Quebec by phone at 1-866-669-6814 or e-mail at contact@clinicaltrialsquebec.ca.
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VI - New recipe available in our Wellness section
A new recipe card has arrived!
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Gill Compton, Certified Naturopathic Nutrition / Natural Chef, has created a delicious and nutritious Savoury Egg Muffins recipe for you. Download it now from our website!
These muffins contain protein, nutrients, and antioxidants in each flavourful savoury bite. They can be enjoyed as breakfast, a snack, or lunch with a side of avocado and sourdough toast.
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VII - NEW! Digital literacy program: Phishing scams
Myeloma Canada is proud to present its newest digital tip-sheet – Phishing scams – as a result of our series of workshops, presented in partnership with Connected Canadians on using digital platforms.
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Phishing is when someone attempts to extract private information from you online. Personal information may include passwords, credit card or bank account information, drivers license number, etc. Usually, the goal is to steal your identity or money. Phishing can start with a legitimate-sounding email or text message, and may even seem as if it's coming from someone you know. |
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VIII - Please join us in welcoming Cooper Lavallée-Roberts to the Myeloma Canada team!
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We’re thrilled to welcome the newest member of our Myeloma Canada team: Cooper Lavallée-Roberts. Cooper joined us on February 13th as our new Coordinator, digital engagement and communications.
In his position, Cooper will be responsible for helping to promote and create awareness for myeloma, Myeloma Canada, our events and programs, across all of our social and digital platforms, and with the media. Some of you may have already e-met Cooper through the Multiple Myeloma Awareness campaign.
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Cooper was born in the isolated region of the Lower North Shore of Quebec, in a town called Blanc-Sablon. He left home to continue his education and now holds a Bachelor’s degree in Communication Studies from Concordia University in Montreal. While in school, Cooper worked with small businesses, helping them with their communications and public relations activities, social media presence and strategies. He also has a passion for video production which we can’t wait to tap in to! Cooper was also a member of the Aire Ouverte Youth Committee where he helped construct a safe environment and provide young adults with access to mental and physical health services.
Cooper was drawn to Myeloma Canada’s mission and promise and is eager to use his creativity and energy to help spread awareness for those affected by myeloma. Based in Montreal, you can reach Cooper at clavalleeroberts@myeloma.ca.
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Spotlight on Anthony Mohamed:
From hospital staff to hospital patient
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" I walked out to my bike in front of St. Michael’s Hospital, where I had been working since 1995. It was just after 5:00 pm on a lovely Monday evening in late August 2015. I was catching up with a colleague, telling him about how much fun last week’s camping trip had been, but that I had so much back pain that the other guys had to help me get out of my bunk bed, and so I had made an appointment with my family doctor for the next day, Tuesday.
I had been experiencing severe pain in my back and ribs for about a year but as I was working out a lot, my doctor put me on muscle relaxants and arthritis medication. "
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Myeloma Canada InfoSessions
Each year Myeloma Canada hosts InfoSessions for people living with myeloma, their families, and healthcare professionals, featuring guest speakers from the medical community in cities across Canada. InfoSessions are generally half-day events covering many aspects of living with, and managing myeloma
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Miramichi (NB) InfoSession in March 2023 |
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Grande-Prairie (AB)
Saturday, April 1, 2023
9:00 - 12:00 pm MST
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Cape Breton (NS)
Friday, April 17, 2023
12:30 pm - 4:30 pm EST
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Myeloma Canada Meet & Greets |
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Our Meet & Greet events are the perfect opportunity to meet and exchange with others in your local community who are living with, or caring for someone with myeloma. You'll also learn the latest developments in myeloma research and symptom management from local experts.
Living in an area that doesn’t yet have a local support group? Meet & Greets are a great starting point! Very often, they're the springboard from which a support group will be formed, and friendships created.
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Stay tuned for upcoming events! |
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Join us online from the comfort of your own home!
All you need is a computer, tablet or smart phone and an internet connection.
Full information on upcoming webinars is available in our 'News & Events' section, or by clicking here.
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"L’importance de prendre soin de soi en tant que proche aidant " (In French only)
Tuesday, April 11, 2023
12:00 pm EST
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Accessing Government Services Online
(Connected Canadians)
Tuesday, May 23, 2023
6:30 pm EST
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"Le retour au travail après une invalidité "
(In French only)
Thursday, June 8, 2023
12:00 pm EST
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Past podcast
Knowledge is Power!
Dr Joe Mikhael, Chief Medical Officer - International Myeloma Foundation
Guest speaker on Myeloma Australia's podcast series, MyeConversations
Areas covered: dealing with relapse, maintenance therapy, length of treatment, MRD, high risk disease and cytogenetics, bone marrow failure, side effects of treatment, causes of myeloma and understanding
how myeloma presents.
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Most webinars are available for free viewing on Myeloma Canada's YouTube channel. Click on the YouTube logo to access our YouTube channel.
Past webinars available for viewing:
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Turn your passion into an event. We can show you how!
Do you want to hold your own fundraising event but don’t know how or where to start? There are so many ways to have fun and raise funds for myeloma. We can help you come up with an idea and get you on your way. We can even design a unique web page to help promote your event.
Contact us today! Reach out to Justin Moore, Myeloma Canada’s National Fundraising and Development Lead at jmoore@myeloma.ca to learn more.
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I - Fundraising your way…community fundraisers |
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Tea for two…and more at Flowers
by Dustin’s Outdoor Tea Party
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Des Ultras contre le Myélome |
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Practice your swing for the Ross Moore Memorial Golf Tournament |
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1.Myeloma Awareness Days are back at the London Regional Cancer Program! |
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On March 9, 2023, London and District Myeloma Support Group’s co-leaders Lisa Bowden and Ev McDowell, Steering Committee member Heather Appleton, and Helen Mahshie (Myeloma Canada’s Regional Manager Community Engagement and Development, Ontario) hosted Myeloma Awareness Days at the London Regional Cancer Program in the Keith Samitt Patient and Family Resource Centre. Support group members also came to support the event on March 10. Educational materials were distributed and appreciated by those who stopped by and some important connections were made. The quality of the interactions is what really stood out and made this event truly worthwhile.
Thank you to the London Regional Cancer Program for their support and to the London and District Support Group for volunteering their precious time and energy to bring this event to life.
We’re looking forward to more Myeloma Awareness Days at your local Cancer Centres! Visit myeloma.ca for future events.
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2.'Patient Voice' profiles Alyssa Dickey |
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Alyssa Dickey's life was forever changed when she was diagnosed with multiple myeloma in 2010 at 32 years old. Facing a rare diagnosis and an uncertain future, Alyssa learned to advocate for herself for treatments and supports to live her best life. Alyssa also posts about current work and other challenges on her blog, “Myeloma in the Middle”.
Alyssa shared her story with Patient Voice, an online platform for Canadian patients, their families, health care workers, and the general public.
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Patient Voice's goal is to educate, elevate, and create a supportive community of empathetic humans through the power of storytelling. Myeloma Canada has partnered with Patient Voice to help create awareness for myeloma by sharing stories from within our community. |
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3. You’re never too young to raise awareness for myeloma!
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Ari and his grandmother, Ruby |
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This touched our hearts! Nine year old Ari from Toronto, ON, contacted us for information on myeloma for his school project, Project Give Back. For the project, each child chooses a charity to which they have a personal connection, to research, present with a presentation board, and create an interactive game. Ari chose Myeloma Canada in honour of his grandmother, Ruby Kaplan, who was diagnosed with myeloma in June 2022.
"I just wanted to thank you for all the information you sent us. Ari learnt so much and really enjoyed reading all the material and watching the videos. Ari presented his project last week and my mother (who has myeloma), myself, and his teachers were all touched and so proud of his presentation. Thank you again for all your help!
- Ari’s mom, Julia
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Congratulations Ari, you are a very special young man!
Thank you for teaching your classmates about myeloma.
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4. Check out the new and improved Vancouver Myeloma Support Group website!
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Congratulations to Kerry McKeen, Helene Lalonde, and Yolande Paine and members of the Vancouver Myeloma Support Group for their tremendous work in creating their new website.
This labour of love was over 1.5 years in the making and is a great resource for the Vancouver myeloma community. Kudos to everyone involved!
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If your group would like to create your own website, Helene has graciously offered to share the Word document used to create content for their site, which you can edit for your local resources. You can contact Helene at halalonde@uniserve.com.
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Myeloma Canada is here to support you along every phase
of your myeloma journey.
Please consult our website at myeloma.ca for up-to-date news and information,
as well as the following helpful links:
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In these difficult times, you, our community, remain our number one priority.
Now more than ever, we appreciate your support. Your donation enables us to continue
providing you with the best information, resources, programs and services - across as many
technology platforms as possible - to stay empowered, informed and connected, while funding
research to help find a cure for this disease.
Thank you for your generosity and for helping us help you.
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Follow us on social media for the most up-to-date information and resources: |
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Si vous préférez recevoir cette Infolettre en français, écrivez-nous à contact@myelome.ca.
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Myeloma Canada's mission: To improve the lives of Canadians impacted by myeloma through awareness-building, educational efforts, advocacy, fostering an empowered myeloma community and support of clinical research so that a cure may be found.
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