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.