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Karina: So Colleen, can you
give me a brief
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overview of your organization &
what you do?
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Colleen: Yeah, absolutely.
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So, Cure SMA is the health organization
for spinal muscular atrophy.
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So our whole organization really is
dedicated to research on the disease
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as well as care and support.
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So we do everything from funding
research to
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organized conferences for
medical providers
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for researchers and then most importantly
for the families. (chuckles)
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So we organize events for families, we
organize conferences,
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we have an abundance of support programs
available for families right from the
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moment they're diagnosed,
all the way through
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adulthood & adults with SMA as well.
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Karina: So you're caring for, I would
assume, mainly high-risk people? Right?
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I guess people with SMA are at high risk
of Covid19.
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So how do they cope with like all those
anxieties and uncertainties?
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Colleen: And being quarantined.
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So like many other diseases, you know SMA
families are accustomed to being
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quarantined. We're often quarantined for
the whole flu season as it is.
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So there's good and there's bad with that.
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So I think that they were ready from the
get-go, to be quarantined.
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They've been quarantined, they've been
doing a great job staying home
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and staying away from germs. The bad about
that is that there are a lot of families
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that have been quarantined since flu
season started & spring is when they're
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supposed to come out. So that's very
difficult.
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But SMA families are so equipped
to handle this
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and I think they've handled a lot better
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than most people because they are used to
needing to stay away from germs
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and take care of themselves & their
families.
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Karina: Yeah, I feel like that's the same
for many people with chronic illnesses
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because we have that kind of resilience
already right? So.
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Colleen: Exactly. You're exactly right.
Yes. Yes. I mean it doesn't...
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There's still high levels of anxiety &
obviously it's so stressful for anyone
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having to stay home especially for such
extended periods of time.
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Socialization of it, children & there's so
many aspects of how this is
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just so difficult for so many.
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Karina: So are there any specific ways of
how you protect your members?
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Can you tell me a little bit about that?
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Colleen: Yeah, we give frequent webinars
about trying to stay safe with Covid19.
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We've done a great job with that. We just
had another one for newly diagnosed
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families. Last week, we're hoping another
one this week.
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So we give them constant education, we
we have great resources on our website
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as well. One of the biggest things that
we've been really excited about is we're
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offering all of our families, all the SMA
families & individuals with SMA have the
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opportunity of receiving, we call it
our Covid19 support package.
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So we're sending them antibacterial wipes,
antibacterial gel, tissues, different
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adult coloring books & things to keep
people occupied. We have things in there
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for kids as well. So we've already sent
out well over a thousand of those.
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And they keep coming in, we're expecting
to probably send two-three thousand
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by the end, which is very exciting. And we
are also providing our families
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through wonderful sponsorships. Giftcards
for grocery stores & restaurants.
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So, which will help them a little bit as
well for being home.
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Karina: So, how did this whole pandemic
affect your work as an organization?
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What changed?
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Colleen: Yeah, a lot. Everything.
As with most.
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You know, we for one, as I mentioned,
have a huge conference every year.
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Where we have people
coming from all over the world
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to attend. So canceling that was big for
us. It's very sad, we put in a lot of
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work and a lot of families love attending
this conference and researchers.
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So it was hard to cancel it but we
obviously didn't have a choice.
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Our number one commitment is to our
families and keeping them safe.
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And then all of our one-day conferences,
all of the country had been canceled as
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well, many months of them. Beyond that we
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really have been great at not skipping a
beat. Right from the get-go, we went home,
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the employees, & we all took packages with
us & we're shipping information out from
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our houses. We have a great team who have
been able to get to the office one by one
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to be able to ship things out, things that
are needed for families, equipment, care
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packages, anything that they need, we have
sill been able to get them right away.
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So, thankfully we haven't had a huge lag.
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Karina: Did you get any feed back
from your members, how this pandemic
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has affected them personally, like their
access to health care, any other big
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challenges they face?
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Colleen: Yeah, our biggest concern has
been people missing treatments. It's very
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important that obviously, all of the
families get treatments.
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Obviously it's understood that there's
gonna be some delays but we really don't
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want people to miss their treatments,
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which are so important. So that's probably
been the biggest way. Obviously, you know
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it's hard for families to even get to
grocery stores. Families don't want to
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leave at all. They don't want to expose
any of their family members to Covid19.
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So they've really been struggling with
trying to make sure they can get things
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delivered, keeping people away, trying
to keep doctor appointments.
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You know, not attending some doctors
appointments even though they should
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You know they've been really worried. So
I'd say that that's the biggest way that
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it's affecting them right now. Just trying
to stay away from, from trying to
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get Covid19.