The Chairman’s Perspective
By Aldo Del Col, Co-founder & Chairman of the Board, Myeloma Canada
Our Vision for 2018

With yet another year of remarkable accomplishments behind us, the Myeloma Canada team is looking forward to delivering new patient-focused programs and grassroots initiatives to educate, encourage and empower our growing community.
Spotlight on Danny Wade:
Diagnosed at the Age of 42
"I was 42, and all I could remember from the information the doctors were sharing with me was that the average survival rate was only 7 years! That meant, I would likely not make it to the age of 50! I would never be there to see my oldest graduate, or my son get his driver’s licence or see my youngest start high school."
Updates in Myeloma Research
Myeloma Canada’s Top 3 Takeaways from ASH 2017

Every December, thousands of hematologists from across the world convene for the American Society of Hematology (ASH) Annual Meeting. This past month, from approximately 5,000 scientific abstracts presented at ASH, the latest groundbreaking clinical research in myeloma was showcased.
Canadian Clinical Trials Update

This is a new monthly feature of Myeloma Matters , intended to keep the community informed about MCRN and other trials across the country.

Learn more about trials that include two Health Canada-approved drugs (carfilzomib (Kyprolis ® ) and daratumumab (Darzalex ® ) which are not yet covered by public health plans) and selinexor , a promising, first-in-class SINE XPO1 antagonist,  which is still in clinical development.
The Myeloma Canada Research Network (MCRN) Announces the Newest Addition to the Team

The Myeloma Canada Research Network is pleased to welcome Molei Fu to the clinical research team. Molei’s role within the organization is as part-time in-house data monitor for MCRN clinical studies and the MCRN Canadian Multiple Myeloma Database. In this capacity, she will be working in clinical trials, data monitoring and electronic Case Report Form (CRF) development.
 
Molei completed her Masters in Bioinformatics at the University of Guelph, where she used virtual screening to identify potential inhibitors of protein toxins. Excited to be taking on this new challenge, Molei brings to the MCRN pertinent experience as a Bioinformatician and is a welcome addition to the clinical research team.
 
Molei can be reached at MFu@myeloma.ca .
Drug Pricing Process in Canada
An opportunity to present the patient’s view on proposed changes

In the spring of 2017, Health Canada issued a call for input from all stakeholders interested to comment on their proposed changes to the Patented Medicine Prices Review Board (PMPRB) regulations.
The panCanadian Pharmaceutical Alliance Has Completed Negotiations for Kyprolis ®


In January 2018, the panCanadian Pharmaceutical (pCPA) announced that price negotiations for Kyprolis® (carfilzomib) for two indications to treat myeloma are now complete.
Upcoming Events
Myeloma Canada Patient and Caregiver InfoSessions
Gatineau, QC
February 24, 2018

*French InfoSession
Details to be announced shortly
Sudbury, ON
March 10, 2018

*English InfoSession
Moncton, NB
March 24, 2018

*Bilingual InfoSession

Patient and Caregiver
Meet & Greet
 
Surrey, BC
February 10, 2018
10:00 am to 2:00 PM
 
Join the myeloma community for a casual meet & greet, the opportunity to meet and exchange with patients and caregivers from the local community, and to learn the latest progress in myeloma research and symptom management from local experts. 

Myeloma Canada National Conference
 
Vancouver, BC
May 12-13, 2018
Radisson Hotel Vancouver Airport
 
Stay tuned for details on the upcoming 2018 Myeloma Canada National Conference in Vancouver, BC. This two-day conference is an opportunity to get the latest news in myeloma research, treatments and disease management. This must-attend conference will include workshops, as well as informative presentations given by leading myeloma experts and an opportunity to meet and exchange with other patients, caregivers and health care professionals.
 
Registration open early February!
Myeloma Canada’s Charity Golf Classic
 
Montreal, QC
May 31, 2018
Summerlea Golf & Country Club
 
Mark your calendars for Myeloma Canada’s Charity Golf Classic held just a short 20-minute drive from the Dorval airport at Summerlea, the prestigious private golf and country club. Enjoy a full day of golf with complimentary BBQ lunch and on-cart refreshments, as well as a reception cocktail, dinner with entertainment and a silent auction in the evening. A dinner-only option will also be available. And it’s all for a good cause! Golf packages will be available soon.
 
Get your company involved! Sponsorship packages are now available. For details, please contact Michelle Oana, Associate Director of Development and Communications at moana@myeloma.ca or 514-421-2242.
In December 2017, Takeda Oncology released the output from the discussions in an official Whitepaper. To read the full publication in Conquer Magazine , click here .
Uncovering the Unmet Needs of People Living with Multiple Myeloma: The  Global Patient Leadership Council
Myeloma Canada, represented by Co-founder and Chairman, Aldo Del Col, took part in the Takeda Global Patient Leadership Council meeting which was held in Lisbon, Portugal. Attended by leaders and patients from around the globe including Germany, Spain, Croatia, the United Kingdom, the U.S., Romania and France, the topic of discussion was “Uncovering the Unmet Needs of People Living with Multiple Myeloma”. By participating in this meeting, we were able to gain further insight from our international colleagues and apply these learnings to our Canadian programs. In return, we also shared the patient-focused programs and tools that Myeloma Canada offers to the Canadian community. The meeting emphasized the sense of a global community where we can learn and grow from one another when we work together, which can in addition inform pharmaceutical companies on what programs are important for patients.
In the Community
Spotlight on Laura Briggs: The Story Behind the Calendar
"I spent too much time thinking about what multiple myeloma had taken from my family and needed to re-frame the narrative to focus on giving," said Laura, on how the idea to create a tribute calendar came to her.
A Resolution for 2018: Giving Back to the Community
It’s just the beginning of the new year and with twelve months ahead of us and new goals for 2018, why not give back to the community and plan a fundraising activity this year! Fundraising can be a fun and rewarding way to collect money and raise awareness for a cause close to your heart. Your contribution will not only raise awareness about myeloma and fund clinical research and important patient programs, it will also have a direct impact on improving the lives of those affected by the disease.
There are a number of ways you can make myeloma matter in your community. Host a bake sale. Host a gala. Run a 10 km race. Find the fundraising event that best suits you and go for it.
A little online research will reveal hundreds of ideas. To help you get started, here are a few ways to fundraise in your community, whether at work or at home:

  • Bake sale
  • Create a challenge
  • Dress down day
  • Yoga-thon, dance-a-thon, or Zumba-thon
  • BBQ
  • Benefit concert or charity open mic
  • Awareness bracelet sale
  • Sport or board-game tournament
  • Gala
  • Golf tournament
  • Car wash
  • Jogging club
  • Lottery, raffle or 50/50
  • Wine and cheese event or wine tasting
  • Paint nite event
  • Game night like bingo or poker
The possibilities are endless and Myeloma Canada is here to help! Contact Michelle Oana, Associate Director of Development and Communications at Myeloma Canada by email moana@myeloma.ca , or by phone 514 755-7244 (toll-free: 1-888-798‑5771) or fill in the form below. Tell us about your fundraising ideas or ask us for more information. We will provide you with all the tools, resources, tips, and advice you need to help make your event a success!
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