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Karina: So Colleen, can you [br]give me a brief

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overview of your organization &[br]what you do?

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Colleen: Yeah, absolutely.

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

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So our whole organization really is [br]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[br]research to

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organized conferences for[br]medical providers

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

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So we organize events for families, we [br]organize conferences,

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

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moment they're diagnosed, [br]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 [br]assume, mainly high-risk people? Right?

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

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

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Colleen: And being quarantined.

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

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quarantined. We're often quarantined for [br]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[br]get-go, to be quarantined.

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

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

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

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supposed to come out. So that's very[br]difficult.

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But SMA families are so equipped[br]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[br]needing to stay away from germs

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and take care of themselves & their [br]families.

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

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

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

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

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

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Socialization of it, children & there's so[br]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 [br]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 [br]about trying to stay safe with Covid19.

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

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

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

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

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

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

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

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

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

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

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

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through wonderful sponsorships. Giftcards [br]for grocery stores & restaurants.

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

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

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What changed?

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Colleen: Yeah, a lot. Everything. [br]As with most.

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

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Where we have people[br]coming from all over the world

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

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

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

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

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And then all of our one-day conferences,[br]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[br]beat. Right from the get-go, we went home,

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

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

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

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packages, anything that they need, we have[br]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[br]from your members, how this pandemic

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

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challenges they face?

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

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important that obviously, all of the[br]families get treatments.

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Obviously it's understood that there's [br]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[br]been the biggest way. Obviously, you know

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

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

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

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delivered, keeping people away, trying[br]to keep doctor appointments.

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

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

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

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get Covid19.