Editor’s Note : In celebration of our 15 ^th Anniversary, the Spotlight section of Myeloma Matters has changed slightly. This year, our Spotlight Stars have been asked to share their stories alongside their relationship and involvement with Myeloma Canada. We hope you enjoy meeting our 2020 Spotlight Stars and that the new format provides you with information you didn’t know before. To all of you who have shared your stories in the past, and to hose of you who continue to do so today, we are indebted...you are an inspiration.   

Dr Song, how and when did Myeloma Canada come into your life?

Dr Kevin Song

I first became involved with Myeloma Canada in a very interesting way! I was attending the American Society of Hematology (ASH) meeting in 2005 and I was getting on a bus, a shuttle, that was taking me to my hotel. A man sat down beside me, looked at my name and subsequently introduced himself to me. That person was Aldo Del Col, one of the Co-founders of Myeloma Canada. Gradually over the next year or so, he started to invite me to Myeloma Canada events. With Aldo’s help, I became more and more involved and was a part of the early organization of Myeloma Canada. It’s been amazing to see it gradually mature to what it is now.

So that’s how it all happened…. with a fortuitous meeting with Aldo Del Col, on a seat on a shuttle!

Why did you choose to get involved in helping people living with myeloma?

As a hematologist, I deal with cancer. Myeloma is one of the cancers I take care of. There were several reasons for why I got involved. One of the most important was that people were searching for knowledge, information, and unfortunately access to this wasn’t very good. There were some local groups that were trying to disseminate knowledge but no one was doing it yet on a national scale. The idea of a national group was very attractive given the type of healthcare we have here in Canada, as it’s relatively uniform. It was important to me to try to be involved with this national organization. And now, it has become the ‘go-to’ place for Canadian’s looking for information on multiple myeloma, as opposed to them having to search for information from other parts of the world. It’s really about information from a Canadian perspective.

What has Myeloma Canada's impact been on the Canadian myeloma landscape?

Myeloma Canada does important things - one is they try to focus on patients and support the patient with knowledge and with access to information. Aldo, as part of his initiative, wanted to make sure that Myeloma Canada could help organise physicians from across the country, and from that he started the Myeloma Canada Scientific Roundtable. Gradually, he also helped to found the Myeloma Canada Research Network, which at one point, was a part of Myeloma Canada. It has now matured and is its own separate organization. Myeloma Canada has really been there since the beginning to really push the research agenda in Canada.

Dr Song at the Myeloma Canada Scientific Roundtable in 2018.

How would you say you contribute to advancing the cause of those affected by myeloma?

On a basic level, I take care of patients with myeloma . On a broader level, I participate in initiatives that Myeloma Canada offers for educating patients, like forums. I’m also a member of the Myeloma Research Network, where we try to have a uniformed, consistent agenda across the country. 

Why do you feel Myeloma Canada is the best medium through which to advocate for those affected by myeloma?

Myeloma Canada has a long history of advocating for patients with myeloma. I think about meeting Aldo, and it seems like yesterday, but it’s been 15 years, and that’s why these interviews are taking place. The organization has a very strong track record of informing and educating patients: through their website, through their outreach, their marches.

Myeloma Canada keeps abreast of new drugs on the horizon . They try to learn about these drugs by interacting directly with the companies who develop them. As drugs go through various stages of clinical development, Myeloma Canada informs patients about them as well as the possible sites which may be involved in the trials. Finally, when the drug is presented to Health Canada for approval, Myeloma Canada collects physician and patient input for the files which are submitted to strengthen the application.

 

I think Myeloma Canada has demonstrated itself to be the organization that has matured and is sophisticated enough to give Canadian’s information to move forward with myeloma.

Can you tell us what inspires you today about the future of myeloma research?

Research in healthcare is moving at lightspeed, with all of these new technologies and new advances happening! The research in myeloma is not slowing down, it continues to move forward aggressively, and I’ve got to be a part of that!

If you had one wish for patients and their loves ones, what would it be?

My one wish for them is that one day we could come to a point where we could cure myeloma, where they could get a treatment that would stop myeloma, and that myeloma would never come back. They wouldn’t have to take any more drugs… they’d be cured.

Thank you for your time and insights Dr Song, and all you do alongside Myeloma Canada.



Thank you!

Editor’s Note: To donate to Myeloma Canada, please visit www.myeloma.ca  or call us toll-free at 1-888-798-5771 .

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