Martine Elias, Myeloma Canada's
Executive Director
|
|
For the past 14 years, the March has been taking place every Fall in communities across the nation. From its first days in 2008 through to 2021, your Multiple Myeloma March fundraising efforts have raised millions of dollars which have been invested in research and our programming.
When I look back at the breakthroughs that have been made in drug advocacy, access, and research over the past decade, our contribution has been more than real.
|
|
Daratumamab added to list of covered medications in Prince Edward Island! |
On July 28, to conclude our legislative actions in the Atlantic, we received great news: daratumamab (Darzalex) was finally added to the list of covered medications in Prince Edward Island for newly diagnosed multiple myeloma and relapsed or refractory multiple myeloma! |
|
|
|
Daratumumab was officially approved by Health Canada in 2016 and put on all province formularies in 2018 and 2019, except for Prince Edward Island. After three years of advocating by our local community and the Myeloma Canada team, we finally got there! We are extremely pleased to be able to share this news with you...It's an important step in ensuring ALL Canadians have access to the best care.
|
|
Where you live should not define the treatments to which you are entitled. In our great country, myeloma can show up at any doorstep; we should all have equal access to the same quality care and treatment. |
|
Surveys: Contribute to research and have your voice heard! |
|
I - Looking for females living with myeloma and of
child-bearing potential
|
|
|
Dr. Cheryl Pritlove, along with a research team at St Michael’s Hospital in Toronto, is conducting a study, “Exploring Experiences of Multiple Myeloma and RevAid Participation among Females of Childbearing Potential: A Qualitative Quality of Life Study”.
|
|
This study involves a one-on-one, private and confidential 1-hr zoom or phone interview and is open to all females living with myeloma anywhere in Canada who are:
- determined to be of childbearing potential;
- following a program for immunomodulatory agents (IMIDs) and the associated RevAid Program (including pregnancy monitoring through the program).
|
|
|
In appreciation, participants will receive a $50 gift card.
Please email any questions you may have about this study directly to:
Be sure to indicate Multiple Myeloma Study in the subject line.
|
|
II - Tell us your thoughts on virtual care |
|
|
“Caring Virtually” is a study being conducted by CONECTed (Collective Oncology Network for Exchange, Cancer care innovation, Treatment access and Education), a network of national oncology patient organizations in Canada, to:
|
|
-
understand cancer patient experiences with using virtual care as a method of healthcare delivery during the COVID-19 pandemic; and
-
develop recommendations that will help to ensure adoption and adaptation of equitable, equal, consistent, and comprehensive virtual care best practices across Canada.
|
|
|
Who can participate?
- Cancer patients over the age of 18, living in Canada who needed to use virtual care during the COVID-19 pandemic as part of their cancer care
Format:
- 30 – 60 minute, one-on-one phone interview
- Interviews will be conducted in English or French
This study includes a parallel component for Indigenous peoples that will allow for dialogue with the communities in order to better understand their experience.
|
|
The study is spearheaded by Majd Ghadban and Julia Stoneman.
Participants will receive $100 in recognition for their contribution to the study.
Questions? Please contact:
|
|
I - Cancer Action Now update
|
|
Myeloma Canada is proud to be part of Cancer Action Now, a national alliance of patient organizations, professional associations, and life sciences companies witnessing the magnitude of the problem our cancer care systems and its patients are facing in light of the pandemic.
|
|
|
We have come together to call on governments to address the issues in our cancer care systems so that Canadians with cancer have a chance to live longer, better lives than anywhere else in the world. Highlights of recent actions taken by Cancer Action Now to put cancer at the top of the political agenda:
-
Secured an op-ed placement in the Globe and Mail with all alliance key messages included. The article was retweeted by André Picard, shared on Twitter 196 times, on Facebook 63 times, and had a total reach of 7,000.
-
15,274 engagements on social media (likes, comments), leading to 3,310,475 social media impressions between July 7 – 14
-
Our Twitter Spaces event had 279 people listen-in live and featured reporters Avis Favaro and Carly Weeks, patients and CANA members. At least 3 ministerial staff also tuned in. An additional 137 (and counting) have listened to the post-event recording. All Premiers and Health Ministers were sent the event audio recording and were encouraged to listen to learn more.
-
Members of the alliance attended the Council of the Federation meeting to engage directly with Premiers and interacted with Premiers Ford, Horgan, Furey and Silver!
We can help make cancer a priority with more resources dedicated to screening and care so Canadians don’t need to die needlessly. More will be planned this fall to help put cancer in its place, so stay tuned!
|
|
|
|
What's new at Myeloma Canada |
|
Your 2022 Multiple Myeloma March update |
|
|
I - Myeloma Canada's 14th Annual Multiple Myeloma March has officially started!
|
|
The 2022 Multiple Myeloma March season kicked off with the Thunder Bay (ON) March on August 20th and we couldn’t be more excited!
With more local and “Your March, Your Way” Marches than ever before, we know that our 14th annual event will be our best one yet.
Thank you to all our amazing volunteers for the tremendous work you’ve been doing to make these Marches happen, in one way or another!
|
|
2022 Thunder Bay Multiple Myeloma March |
|
II - Your March, Your Way
Whether we physically walk together this fall or you choose to do Your March, Your Way, you’ll be playing a crucial role in making myeloma matter. Funds raised through our flagship national event enable us to invest in important research that helps to improve the lives of those living with myeloma, advocate for access to new drug therapies, and keep the needle moving forward toward finding a cure.
|
|
If you haven’t signed up already, don’t wait a minute longer! |
|
Help us reach our fundraising goal of $750,000.
Simply click on the city you'd like to participate in to get started.
Please be sure to check your community’s Multiple Myeloma March webpage for changes.
|
|
|
|
For all cash and cheque donations:
-
Download and print the "Offline Donation" form here.
-
Bring your completed forms and donations with you to your local March event, or
-
Mail-in your form and donations to: Myeloma Canada, 1255 TransCanada Hwy, Suite 160, Dorval, QC H9P 2V4
|
|
|
III - NEW! Myeloma Canada’s Multiple Myeloma March Mini Mag |
|
New for 2022, Myeloma Canada’s Multiple Myeloma March Mini Mag (also known as the MMM Mini Mag)...it’s chock-full of important and exciting news and updates on the Multiple Myeloma Marches around the country.
|
|
|
|
|
There’s no better way to stay connected to your passions than volunteering!
We are beyond grateful for any time you can devote to help further our cause. Whether you’ve got a few hours to spare a day, a week, a month, or even a year, there’s always something you can do to help make myeloma matter!
|
|
|
|
Spotlight on Kundan Uppal-Dubinsky :
Giving back and being grateful
|
|
|
|
I was diagnosed with multiple myeloma at the very end of August of 2016. I was 54 years old but for sure I had been living with it for at least 2 years before.
In hindsight, for several years before my diagnosis I experienced tremendous fatigue, but I really didn’t think much of it. I figured it comes with living a busy life and getting older. Now, I see that it was most probably the beginning of the myeloma.
|
|
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.
|
|
|
 |
Vaudreuil-Dorion (QC) - bilingual
Tuesday, August 30, 2022
10:00 am - 2:00 pm EST
|
|
|
|
Moncton (NB) - in French
Friday, September 23, 2022
4:00 pm - 7:30 pm EST
|
|
|
|
Learning all about myeloma, it’s treatment, new research and available resources at Myeloma Canada's Patient & Caregiver InfoSessions in Windsor (ON) and Langley (BC): |
|
InfoSession in Windsor (ON) |
|
InfoSession in Langley (BC) |
|
Thank you to our excellent speakers for sharing their time
and expert knowledge with the groups!
|
|
Myeloma Canada Meet & Greets |
|
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.
|
|
|
|
Saint John (NB)
Thursday, September 22, 2022
3:00 - 5:00 pm EST
|
|
|
|
Red Deer / Spruce View (AB)
Thursday, October 20, 2022
5:30 - 7:30 pm EST
|
For myeloma and AL amyloidosis patients and caregivers |
|
|
|
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.
|
|
|
Save the date! Upcoming webinars in collaboration with Connected Canadians: |
|
Getting help with technology
September 29, 2022
11:00 - 12:00 pm EST
In French with English translation
|
|
Phishing scams
November 24, 2022
11:00 - 12:00 pm EST
In French with English translation
|
|
Recognizing fake news
December 14, 2022
11:00 - 12:00 pm EST
In English with French translation
|
|
|
All webinars are available for free viewing on
Click on the YouTube logo to access our YouTube channel.
Past webinars:
|
|
|
|
Older now but still runinn:
half-marathons for 60 years
|
|
Francine Boucher Memorial
Fun Tennis Event
|
|
BDO: Moving Mountains for Myeloma Canada |
|
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:
|
|
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.
|
|
Follow us on social media for the most up-to-date information and resources: |
|
Si vous préférez recevoir cette Infolettre en français, écrivez-nous à contact@myelome.ca.
|
|
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.
|
|
|
|
|
|
|
