Myeloma Canada's 15th Anniversary Heralds Successes in Advocacy and Patient-Empowerment
Passion and Dedication of Myeloma Patients and Caregivers Contribute to Advancing Awareness and Raising Funds for Incurable Blood Cancer.
MONTREAL, Oct. 2, 2020 /CNW Telbec/ - In an effort to keep moving forward for a cure for myeloma, Myeloma Canada's community of patients and caregivers have embraced programming adaptations to become an even stronger and more committed community. Myeloma, or multiple myeloma, is the second most common form of incurable blood cancer. Even though nine Canadians are diagnosed with myeloma every day, it remains relatively unknown.
Despite the constraints and challenges of the COVID-19 pandemic, the patient-driven organization - the first and only non-profit organization dedicated exclusively to the Canadian myeloma community and to raising funds for advancing Canadian myeloma research - has been agile in adapting its programs, support and services that empower its community of myeloma patients, caregivers, healthcare professionals, researchers and industry leaders. "We will not stop advocating for access to new drug regimens, for better and more effective therapies, and for all those affected by myeloma to empower themselves at every point in their journey," said Martine Elias, Executive Director of Myeloma Canada.
Fundamental to the organization's philosophy is that the patient voice be heard. As such, patients play a critical role in resource and program development, ensuring a patient orientation so that materials and programs meet the needs and concerns of the myeloma community. "Myeloma Canada connects the Canadian myeloma community. They ensure the patient voice is heard and incorporated into everything they do, especially advocacy. We're empowered with the right information and tools to ask the right questions, and we fight for the newest drugs. Myeloma Canada has made me a smarter person and a smarter patient. They taught me to self-advocate, to take an active role in how I live with this disease. With Myeloma Canada you don't have to go through this alone" said Lorelei Dalrymple, who has been living with myeloma since 2009. David McMullen, living with myeloma since 2013 added, "If we didn't have a national organization like Myeloma Canada who advocates so effectively for patients, we would not have access to some of the treatments available today. Having that voice at a national level is so critical when it comes to pushing forward new treatments, and educating healthcare providers and the general public about myeloma. Myeloma Canada truly meets the needs of patients like me in every possible way. It's about how those smaller pieces come together to benefit patients."
"September was National Blood Cancer Awareness month. While the month has officially come to a close, our collective work creating and increasing awareness for myeloma is far from over. The world has changed since the COVID-19 pandemic, but one thing has stayed constant and even intensified: the unwavering support of our community as we work together to improve the lives of all Canadians impacted by myeloma," stated Elias. "This past January, Myeloma Canada celebrated our 15th anniversary. Since our founding, we have seen tremendous breakthroughs in myeloma research and treatment. People are living longer, with a better quality of life and more treatment options than when we began our work together 15 years ago. So much of this owed to the strengthen and perseverance of our remarkable community."
Among programming achievements:
- The Multiple Myeloma March (www.myelomamarch.ca ) - Myeloma Canada's national flagship fundraiser that takes place every fall. " Through the incredible creativity, dedication and resolve of our patient and caregiver community, our Marches are going on, whether as individual walks, smaller group marches, or zoom events and launches," said Michelle Oana, Myeloma Canada's Director of Development and Community Relations. "Despite the pandemic, our community is more engaged than ever."
- "My Life. My Myeloma." award-winning online resource centre (www.mymyeloma.ca) has been updated to feature new patient journey videos; essential downloadable tools for patient-empowered shared decision-making and discussions; the Myeloma Monitor, a personalized, award-winning application designed with patients to help them and their caregivers organize, track and manage important health-related information; and the new Myeloma Drug Access Navigator, an easy-to-use, interactive, online tool that provides an at-a-glance breakdown of myeloma drug coverage across Canada by province and territory.
- The Myeloma Canada 11th Annual Scientific Roundtable, a unique gathering of some of the most renown Canadian and international leaders in myeloma, industry partners, people living with myeloma as well as caregivers, to share, discuss and learn from one another, and to brainstorm on future research ideas. Typically an in-person event, the Roundtable was held on a virtual meeting platform with record-breaking attendance on September 18, 2020.
- "15 Years of Making Myeloma Matter" - Myeloma Canada's 1st Corporate Video highlighting how far the organization has come since its founding; how from the absence of a national organization dedicated specifically to myeloma, two determined men living with myeloma – Aldo Del Col and John Lemieux – came together to create this Canadian focused organization.
Multiple myeloma, also known as myeloma, is the second most common form of blood cancer. Myeloma affects a type of immune cell called the plasma cell, found in the bone marrow. Every day, nine Canadians are diagnosed, yet in spite of its growing prevalence, the disease remains relatively unknown. While there is no cure, people with myeloma are living longer and better lives, thanks to recent breakthroughs in treatment. To learn more, visit www.myeloma.ca
ABOUT MYELOMA CANADA
This year marks the 15th anniversary of the creation of Myeloma Canada, the only national charitable organization created by, and for, Canadians impacted by multiple myeloma. The organization is driven to improve the lives of those affected by myeloma by empowering the community through awareness, education and advocacy programs, and supporting clinical research to find a cure. Since its founding in 2005, Myeloma Canada has been making myeloma matter. To learn more, or to donate, please visit www.myeloma.ca.
For more information, please contact:
Martine Elias, Executive Director
SOURCE Multiple Myeloma Canada