COVID-19 Response - Cure SMA - Colleen McCarthy O'Toole

Karina: So Colleen, can you
give me a brief

overview of your organization &
what you do?

Colleen: Yeah, absolutely.

So, Cure SMA is the health organization
for spinal muscular atrophy.

So our whole organization really is
dedicated to research on the disease

as well as care and support.

So we do everything from funding
research to

organized conferences for
medical providers

for researchers and then most importantly
for the families. (chuckles)

So we organize events for families, we
organize conferences,

we have an abundance of support programs
available for families right from the

moment they're diagnosed,
all the way through

adulthood & adults with SMA as well.

Karina: So you're caring for, I would
assume, mainly high-risk people? Right?

I guess people with SMA are at high risk
of Covid19.

So how do they cope with like all those
anxieties and uncertainties?

Colleen: And being quarantined.

So like many other diseases, you know SMA
families are accustomed to being

quarantined. We're often quarantined for
the whole flu season as it is.

So there's good and there's bad with that.

So I think that they were ready from the
get-go, to be quarantined.

They've been quarantined, they've been
doing a great job staying home

and staying away from germs. The bad about
that is that there are a lot of families

that have been quarantined since flu
season started & spring is when they're

supposed to come out. So that's very
difficult.

But SMA families are so equipped
to handle this

and I think they've handled a lot better

than most people because they are used to
needing to stay away from germs

and take care of themselves & their
families.

Karina: Yeah, I feel like that's the same
for many people with chronic illnesses

because we have that kind of resilience
already right? So.

Colleen: Exactly. You're exactly right.
Yes. Yes. I mean it doesn't...

There's still high levels of anxiety &
obviously it's so stressful for anyone

having to stay home especially for such
extended periods of time.

Socialization of it, children & there's so
many aspects of how this is

just so difficult for so many.

Karina: So are there any specific ways of
how you protect your members?

Can you tell me a little bit about that?

Colleen: Yeah, we give frequent webinars
about trying to stay safe with Covid19.

We've done a great job with that. We just
had another one for newly diagnosed

families. Last week, we're hoping another
one this week.

So we give them constant education, we
we have great resources on our website

as well. One of the biggest things that
we've been really excited about is we're

offering all of our families, all the SMA
families & individuals with SMA have the

opportunity of receiving, we call it
our Covid19 support package.

So we're sending them antibacterial wipes,
antibacterial gel, tissues, different

adult coloring books & things to keep
people occupied. We have things in there

for kids as well. So we've already sent
out well over a thousand of those.

And they keep coming in, we're expecting
to probably send two-three thousand

by the end, which is very exciting. And we
are also providing our families

through wonderful sponsorships. Giftcards
for grocery stores & restaurants.

So, which will help them a little bit as
well for being home.

Karina: So, how did this whole pandemic
affect your work as an organization?

What changed?

Colleen: Yeah, a lot. Everything.
As with most.

You know, we for one, as I mentioned,
have a huge conference every year.

Where we have people
coming from all over the world

to attend. So canceling that was big for
us. It's very sad, we put in a lot of

work and a lot of families love attending
this conference and researchers.

So it was hard to cancel it but we
obviously didn't have a choice.

Our number one commitment is to our
families and keeping them safe.

And then all of our one-day conferences,
all of the country had been canceled as

well, many months of them. Beyond that we

really have been great at not skipping a
beat. Right from the get-go, we went home,

the employees, & we all took packages with
us & we're shipping information out from

our houses. We have a great team who have
been able to get to the office one by one

to be able to ship things out, things that
are needed for families, equipment, care

packages, anything that they need, we have
sill been able to get them right away.

So, thankfully we haven't had a huge lag.

Karina: Did you get any feed back
from your members, how this pandemic

has affected them personally, like their
access to health care, any other big

challenges they face?

Colleen: Yeah, our biggest concern has
been people missing treatments. It's very

important that obviously, all of the
families get treatments.

Obviously it's understood that there's
gonna be some delays but we really don't

want people to miss their treatments,

which are so important. So that's probably
been the biggest way. Obviously, you know

it's hard for families to even get to
grocery stores. Families don't want to

leave at all. They don't want to expose
any of their family members to Covid19.

So they've really been struggling with
trying to make sure they can get things

delivered, keeping people away, trying
to keep doctor appointments.

You know, not attending some doctors
appointments even though they should

You know they've been really worried. So
I'd say that that's the biggest way that

it's affecting them right now. Just trying
to stay away from, from trying to

get Covid19.