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This Thanksgiving Season, the Myeloma Canada Team is Thankful
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Spotlight on the Community:
Recognizing Engagement from the Canadian Myeloma Community
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This fall has been our busiest season yet: filled with events, conferences, community fundraisers and a record number of Multiple Myeloma Marches! The Myeloma Canada team applauds the significant efforts that you have helped with over the last few months. It was incredible to witness the dedication and passion shown by our growing family. We are thankful and heartened by your support.
Below are some highlights of our community efforts that took place over the last few months:
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Awareness Day at Parliament Hill
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On October 3, Myeloma Canada Patient Advocates from across the country gathered together on Parliament Hill to meet one-on-one with Members of Parliament to not only increase awareness about myeloma at the national level and the express the need to fund important research, but also to stress the importance of improving the Canadian regulatory drug review process and affordability of new therapies, so that Canadians impacted by myeloma are able to access these new, life-saving treatments in a timely manner.
Thank you to the Patient Advocates for participating in this impactful day to put myeloma on the map and to our MP's for taking action to make myeloma matter. Patient Advocates included
David McConkey, David McMullen, Hervé Benoît, Frank Shepherd, Julie Gibbons, Julie Salsman, Keith Taylor, Lorelei Dalrymple, Michael Chibuk, Nancy Shamanna, Robin Sully, Ron Surry and Trish MacDonald.
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Patient Advocate Trish Macdonald from Nova Scotia, Patient Advocate David McMullen from Ontario, Patient Advocate Julie Salsman from Nova Scotia, Darren Fisher, MP for Dartmouth-Cole Harbour and Patient Advocate Ron Surry from British Columbia
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Patient Advocate David McConkey from Newfoundland, James Maloney, MP for Etobicoke-Lakeshore, Martine Elias from Myeloma Canada and Patient Advocate Hervé Benoît from Quebec
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To add your voice and drive advocacy for treatment access, take part in our Myeloma Advocacy Program (MAP) and write to your MPP/MLA/MNA. For more information of how to take action, visit
www.myelomacommunity.ca.
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Myeloma Canada Patient Advisory Council from left to right: Julie Salsman, Hervé Benoît, Lorelei Dalrymple, David McConkey, Keith Taylor and Julie Gibbons
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The Patient Voice Has a Seat at the Myeloma
Canada Scientific Roundtable
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Thank you to our patient representatives Lorelei Dalrymple, Julie Salsman, David McConkey, Hervé Benoît, Julie Gibbons, Keith Taylor, Sophia Tavoularis, Ellis Basevitz, Anthony Everett and Marsha McWhinnie for joining us at the Myeloma Canada Scientific Roundtable on September 15 and 16 in Montreal. Your seat at the table provided valuable input and perspective for our Canadian researchers and reminded them why patients belong at the forefront of clinical trial design.
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Promoting Early Diagnosis at the 2017 Annual Scientific Assembly in Regina
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Raising awareness for family physicians about the importance of early diagnosis and what signs and symptoms to look out for is part of Myeloma Canada’s mandate. As part of the Early Diagnosis Program, this September. Myeloma Canada was present at the 2017 Annual Scientific Assembly in Regina to raise awareness with the family physicians who were in attendance. Thank you to Mona Neher, Doug Page and Quentin Prudat for volunteering your time to help out with this important event!
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Martine Elias, Director of Access, Advocacy and Community Relations at Myeloma Canada and Mona Neher, patient volunteer and Support Group Leader in Regina
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2017 Support Group Leader’s and Advocacy Summit
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The Myeloma Canada family is growing! Thirty-two Support Group Leaders, members from our Patient Advisory Council and Advocacy Committee from across the country joined us in Ottawa during the weekend of September 30 to network, as well as learn and exchange ideas, information and best practices. The Summit was also an excellent opportunity for them to learn more about the latest research and clinical trials and how to leverage the available tools on how to be a leader and patient advocate. Everyone walked away well equipped with a wealth of information, tools and updates to share with their respective groups. Thank you for sharing this enrichening experience with us!
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Highlights From the Kitchener-Waterloo InfoSession
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On September 9, over 70 patients and caregivers came out to join us for the very first Myeloma Canada InfoSession in Kitchener. What great energy and support in the crowd! Many who also registered for the very first Kitchener-Waterloo Multiple Myeloma March sported their team t-shirts. Leaders from four Support Groups in surrounding areas were present and a new Support Group in the Kitchener-Waterloo region is in now the works! Thank you to our expert speakers: Dr Martha Louzada, Oncologist/Hematologist; Michael Collins, Clinical Pharmacist in Oncology; Naveen Bangia, The Binding Site; Ev McDowell, patient and Support Group Leader; Carlee England, Multiple Myeloma March Leader; and finally, Michelle Oana and Gabriele Colasurdo, Myeloma Canada.
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Many photo albums from the Marches are now available on Myeloma Canada’s Flickr account.
Click here
to view, download or share your photos!
*Note: there are still a few albums awaiting to be uploaded. Be sure to check back in a few weeks if your community’s March album has not been added yet.
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15 Multiple Myeloma Marches in One Month and 2 to Go!
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Congratulations to the over 2,000 marchers and nearly 5,000 donors from coast to coast who have joined or supported the 8
th annual Multiple Myeloma March to date! Many new local communities, Support Groups, networks and connections were born as a result. Our goal of raising awareness and bringing communities together has certainly been achieved!
To register for the upcoming Thunder Bay or Vancouver Multiple Myeloma Marches, visit
www.myelomamarch.ca
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From coast to coast, support from community events have taken Myeloma Canada by whirlwind this fall season! A sincere thank you to all the local event organizers and supporters for doing your part to increase awareness and raise important funds in order to help accelerate access to better care.
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Spotlight on Susan Collins, Patient and Support Group Leader in Saint John, New Brunswick
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“Research offers hope for a cure, and in a small way I feel I am making a contribution to unlocking the doors to a cure”
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The Myeloma Canada Research Network is Now Recruiting Patients for
MCRN 005 - The Boston Trial
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This pivotal trial is led by Dr. Nizar Bahlis from the Arnie Charbonneau Cancer Institute of the University of Calgary in Alberta. The study will compare the combination of
selinexor, bortezomib (
Velcade®) and
dexamethasone (SVd) versus the combination bortezomib and dexamethasone (Vd) in patients with relapsed or refractory myeloma who have had 1-3 prior lines of therapy.
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