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January 24, 2013
Susie Novis is the co-founder of the International Myeloma Foundation
(IMF), one of the leading advocacy groups in the fight against myeloma
worldwide. After losing her husband to the disease, Susie began traveling the U.S. and the world to raise funds for research and programs and to
educate patients, family members and healthcare professionals. Patient Power is
proud to call the IMF a partner. In this interview at the 2012 American Society of
Hematology (ASH) meeting in Atlanta, she explains how we are "turning a corner" in myeloma with more
good things to come.
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Hello and welcome to Patient Power. I’m Andrew Schorr on location at the American
Society of Hematology meeting in Atlanta.
I’m standing with an old friend, Susie Novis, who is one of the founders
and the president of the International Myeloma Foundation that’s done so much
good all around the world for families affected by myeloma.
Susie, this meeting is sort of action central.
year we look forward to ASH, and we know that it’s going to be an amazing
meeting. We also know that we better get
ready to put our running shoes on and get going because there’s just so much
I have to tell you, the first ASH I ever went to was in
Denver many, many years ago, early 1990s, and it was small. And just to see how ASH has grown, I think is
really exciting because it sort of—the IMF almost mirrors the growth, obviously
not on the same scale, but as ASH grew so did we. It’s a meeting that is wonderful because
there are so many more people working in multiple myeloma that makes it a
really outstanding meeting for us.
People working, and those benefits are paying off. How do you see it for patients today? Obviously, it’s not just one version of a disease.
There are different stories.
But just generally, which way is the wind blowing, if you
I think how I’m seeing it is that when more and more people
are working together in a collaborative way we’re going to have much more
progress, and I think the progress that we’ve seen over the past few years is
almost like one of those things out of Star Wars where whoosh. It’s like you’ve
jumped ahead light years.
It also means for patients that receiving the diagnosis of
myeloma, while devastating, it’s not the death sentence it once was, and that
is huge. Yes, we’re still losing people
to myeloma, but I have heard the word “cure” actually bandied about, and so
that’s very, very good news.
All right. Let’s talk
about the focus of your organization.
You are on the road all the time.
All the time.
Devoted, nationally and internationally. In that spirit of making progress and people
coming together, do you feel that happening now where there’s worldwide
communication, worldwide education?
Yes. Like never
before. And you have to understand that
when we decided to start this organization it was three people, Brian Durie,
Brian Novis and myself. And so it was a
Scot, a South African, and I don’t know if you know, but I’m an American, but
from the very beginning it was always about helping people and working on an
international level. We were the
International Myeloma Foundation from the start, so it’s only natural that we
have travelled around the world to help patients, to work with clinicians, to
work with nurses, because that’s the only way.
It’s a global problem.
It’s going to take a global answer to find the cure. We’re constantly moving because you never
know where the next best idea is going to come from, and there are people
everywhere that are suffering from this disease, and we can make things
better. That’s definitely for sure.
For our viewers, family members and patients—
—obviously contribute if they can—
—but beyond that what can they do to play an active role so
that we can all work together as a community?
Well, I think that one of the most important things is that
while we have done an amazing job of informing the world about what multiple
myeloma is we still have only reached a certain percentage. You can never tell the story enough. We’re always reaching new and new people, but
if you’re touched by myeloma, whether you yourself has it or a family member or
a friend, when you get out there and you start spreading the word about
multiple myeloma and, no, it’s not multiple this, it just helps people start
thinking about, well, why are these diseases occurring more rapidly? Why are we seeing a rise in cancer?
It’s not just about finding diseases, it’s about creating a
safer environment in which we can all live to try to start putting an end to
I can’t thank you enough on behalf of thousands and
thousands of people worldwide for what you do.
You always seem to have boundless energy, and really I want to give you
a hug, okay?
I want to give you a hug, too.
All right. Thank
you. Susie Novis, she and her team
devoted, and for anybody affected by myeloma you have to just really thank them
for all they do. And as you heard, you
can play a role. And here, you heard
about all the action. It is very, very
promising. Let’s cure myeloma.
And one last comment.
Okay. If you want to
know about multiple myeloma and how you can get involved and help, go to our
website www.myeloma.org. And if you have
a question for our hotline coordinators dial 1-800-452-CURE. Thanks so much Andrew. This is a wonderful opportunity.
Thank you. And you
are never alone.
On location in Atlanta at the American Society of Hematology
meeting and with Susie Novis with the IMF, I’m Andrew Schorr. Remember, knowledge can be the best medicine
By Andrew Schorr