[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:04.87,0:00:07.17,Default,,0000,0000,0000,,Karina: So Colleen, can you \Ngive me a brief
Dialogue: 0,0:00:07.17,0:00:10.46,Default,,0000,0000,0000,,overview of your organization &\Nwhat you do?
Dialogue: 0,0:00:11.27,0:00:12.64,Default,,0000,0000,0000,,Colleen: Yeah, absolutely.
Dialogue: 0,0:00:12.64,0:00:17.49,Default,,0000,0000,0000,,So, Cure SMA is the health organization\Nfor spinal muscular atrophy.
Dialogue: 0,0:00:17.76,0:00:24.22,Default,,0000,0000,0000,,So our whole organization really is \Ndedicated to research on the disease
Dialogue: 0,0:00:24.51,0:00:27.28,Default,,0000,0000,0000,,as well as care and support.
Dialogue: 0,0:00:27.28,0:00:30.39,Default,,0000,0000,0000,,So we do everything from funding\Nresearch to
Dialogue: 0,0:00:30.39,0:00:33.64,Default,,0000,0000,0000,,organized conferences for\Nmedical providers
Dialogue: 0,0:00:33.64,0:00:37.76,Default,,0000,0000,0000,,for researchers and then most importantly\Nfor the families. (chuckles)
Dialogue: 0,0:00:37.76,0:00:43.25,Default,,0000,0000,0000,,So we organize events for families, we \Norganize conferences,
Dialogue: 0,0:00:43.64,0:00:47.77,Default,,0000,0000,0000,,we have an abundance of support programs \Navailable for families right from the
Dialogue: 0,0:00:47.77,0:00:51.13,Default,,0000,0000,0000,,moment they're diagnosed, \Nall the way through
Dialogue: 0,0:00:51.13,0:00:53.49,Default,,0000,0000,0000,,adulthood & adults with SMA as well.
Dialogue: 0,0:00:53.55,0:00:59.26,Default,,0000,0000,0000,,Karina: So you're caring for, I would \Nassume, mainly high-risk people? Right?
Dialogue: 0,0:00:59.47,0:01:03.70,Default,,0000,0000,0000,,I guess people with SMA are at high risk\Nof Covid19.
Dialogue: 0,0:01:04.14,0:01:11.32,Default,,0000,0000,0000,,So how do they cope with like all those \Nanxieties and uncertainties?
Dialogue: 0,0:01:11.45,0:01:13.43,Default,,0000,0000,0000,,Colleen: And being quarantined.
Dialogue: 0,0:01:14.06,0:01:22.91,Default,,0000,0000,0000,,So like many other diseases, you know SMA\Nfamilies are accustomed to being
Dialogue: 0,0:01:22.91,0:01:26.57,Default,,0000,0000,0000,,quarantined. We're often quarantined for \Nthe whole flu season as it is.
Dialogue: 0,0:01:27.59,0:01:30.14,Default,,0000,0000,0000,,So there's good and there's bad with that.
Dialogue: 0,0:01:30.31,0:01:34.08,Default,,0000,0000,0000,,So I think that they were ready from the\Nget-go, to be quarantined.
Dialogue: 0,0:01:34.08,0:01:37.50,Default,,0000,0000,0000,,They've been quarantined, they've been \Ndoing a great job staying home
Dialogue: 0,0:01:38.61,0:01:44.15,Default,,0000,0000,0000,,and staying away from germs. The bad about\Nthat is that there are a lot of families
Dialogue: 0,0:01:44.15,0:01:48.68,Default,,0000,0000,0000,,that have been quarantined since flu \Nseason started & spring is when they're
Dialogue: 0,0:01:48.68,0:01:52.62,Default,,0000,0000,0000,,supposed to come out. So that's very\Ndifficult.
Dialogue: 0,0:01:52.65,0:01:57.01,Default,,0000,0000,0000,,But SMA families are so equipped\Nto handle this
Dialogue: 0,0:01:57.01,0:02:00.24,Default,,0000,0000,0000,,and I think they've handled a lot better
Dialogue: 0,0:02:00.24,0:02:04.24,Default,,0000,0000,0000,,than most people because they are used to\Nneeding to stay away from germs
Dialogue: 0,0:02:04.24,0:02:06.60,Default,,0000,0000,0000,,and take care of themselves & their \Nfamilies.
Dialogue: 0,0:02:06.60,0:02:11.43,Default,,0000,0000,0000,,Karina: Yeah, I feel like that's the same\Nfor many people with chronic illnesses
Dialogue: 0,0:02:11.43,0:02:15.49,Default,,0000,0000,0000,,because we have that kind of resilience \Nalready right? So.
Dialogue: 0,0:02:16.09,0:02:20.22,Default,,0000,0000,0000,,Colleen: Exactly. You're exactly right. \NYes. Yes. I mean it doesn't...
Dialogue: 0,0:02:20.22,0:02:24.13,Default,,0000,0000,0000,,There's still high levels of anxiety & \Nobviously it's so stressful for anyone
Dialogue: 0,0:02:24.13,0:02:28.32,Default,,0000,0000,0000,,having to stay home especially for such\Nextended periods of time.
Dialogue: 0,0:02:28.32,0:02:32.54,Default,,0000,0000,0000,,Socialization of it, children & there's so\Nmany aspects of how this is
Dialogue: 0,0:02:32.54,0:02:35.71,Default,,0000,0000,0000,,just so difficult for so many.
Dialogue: 0,0:02:35.71,0:02:39.85,Default,,0000,0000,0000,,Karina: So are there any specific ways of \Nhow you protect your members?
Dialogue: 0,0:02:39.90,0:02:42.64,Default,,0000,0000,0000,,Can you tell me a little bit about that?
Dialogue: 0,0:02:42.64,0:02:47.08,Default,,0000,0000,0000,,Colleen: Yeah, we give frequent webinars \Nabout trying to stay safe with Covid19.
Dialogue: 0,0:02:47.08,0:02:51.15,Default,,0000,0000,0000,,We've done a great job with that. We just \Nhad another one for newly diagnosed
Dialogue: 0,0:02:51.15,0:02:55.30,Default,,0000,0000,0000,,families. Last week, we're hoping another\None this week.
Dialogue: 0,0:02:55.39,0:03:00.74,Default,,0000,0000,0000,,So we give them constant education, we\Nwe have great resources on our website
Dialogue: 0,0:03:00.74,0:03:05.80,Default,,0000,0000,0000,,as well. One of the biggest things that \Nwe've been really excited about is we're
Dialogue: 0,0:03:05.80,0:03:10.40,Default,,0000,0000,0000,,offering all of our families, all the SMA\Nfamilies & individuals with SMA have the
Dialogue: 0,0:03:10.40,0:03:14.58,Default,,0000,0000,0000,,opportunity of receiving, we call it\Nour Covid19 support package.
Dialogue: 0,0:03:15.09,0:03:22.57,Default,,0000,0000,0000,,So we're sending them antibacterial wipes,\Nantibacterial gel, tissues, different
Dialogue: 0,0:03:22.57,0:03:27.46,Default,,0000,0000,0000,,adult coloring books & things to keep\Npeople occupied. We have things in there
Dialogue: 0,0:03:27.46,0:03:31.66,Default,,0000,0000,0000,,for kids as well. So we've already sent\Nout well over a thousand of those.
Dialogue: 0,0:03:32.03,0:03:36.65,Default,,0000,0000,0000,,And they keep coming in, we're expecting\Nto probably send two-three thousand
Dialogue: 0,0:03:36.65,0:03:40.98,Default,,0000,0000,0000,,by the end, which is very exciting. And we\Nare also providing our families
Dialogue: 0,0:03:41.00,0:03:46.88,Default,,0000,0000,0000,,through wonderful sponsorships. Giftcards \Nfor grocery stores & restaurants.
Dialogue: 0,0:03:46.88,0:03:51.03,Default,,0000,0000,0000,,So, which will help them a little bit as\Nwell for being home.
Dialogue: 0,0:03:51.03,0:03:55.87,Default,,0000,0000,0000,,Karina: So, how did this whole pandemic\Naffect your work as an organization?
Dialogue: 0,0:03:55.87,0:03:57.36,Default,,0000,0000,0000,,What changed?
Dialogue: 0,0:03:57.47,0:04:02.88,Default,,0000,0000,0000,,Colleen: Yeah, a lot. Everything. \NAs with most.
Dialogue: 0,0:04:02.88,0:04:07.45,Default,,0000,0000,0000,,You know, we for one, as I mentioned,\Nhave a huge conference every year.
Dialogue: 0,0:04:07.45,0:04:10.41,Default,,0000,0000,0000,,Where we have people\Ncoming from all over the world
Dialogue: 0,0:04:10.41,0:04:17.72,Default,,0000,0000,0000,,to attend. So canceling that was big for\Nus. It's very sad, we put in a lot of
Dialogue: 0,0:04:17.72,0:04:21.38,Default,,0000,0000,0000,,work and a lot of families love attending\Nthis conference and researchers.
Dialogue: 0,0:04:21.38,0:04:24.67,Default,,0000,0000,0000,,So it was hard to cancel it but we\Nobviously didn't have a choice.
Dialogue: 0,0:04:24.67,0:04:28.60,Default,,0000,0000,0000,,Our number one commitment is to our\Nfamilies and keeping them safe.
Dialogue: 0,0:04:28.60,0:04:32.74,Default,,0000,0000,0000,,And then all of our one-day conferences,\Nall of the country had been canceled as
Dialogue: 0,0:04:32.74,0:04:36.64,Default,,0000,0000,0000,,well, many months of them. Beyond that we
Dialogue: 0,0:04:36.64,0:04:41.47,Default,,0000,0000,0000,,really have been great at not skipping a\Nbeat. Right from the get-go, we went home,
Dialogue: 0,0:04:41.47,0:04:45.83,Default,,0000,0000,0000,,the employees, & we all took packages with\Nus & we're shipping information out from
Dialogue: 0,0:04:45.83,0:04:52.81,Default,,0000,0000,0000,,our houses. We have a great team who have\Nbeen able to get to the office one by one
Dialogue: 0,0:04:52.81,0:04:58.89,Default,,0000,0000,0000,,to be able to ship things out, things that\Nare needed for families, equipment, care
Dialogue: 0,0:04:58.89,0:05:04.86,Default,,0000,0000,0000,,packages, anything that they need, we have\Nsill been able to get them right away.
Dialogue: 0,0:05:04.86,0:05:08.68,Default,,0000,0000,0000,,So, thankfully we haven't had a huge lag.
Dialogue: 0,0:05:08.68,0:05:13.53,Default,,0000,0000,0000,,Karina: Did you get any feed back\Nfrom your members, how this pandemic
Dialogue: 0,0:05:13.53,0:05:17.65,Default,,0000,0000,0000,,has affected them personally, like their\Naccess to health care, any other big
Dialogue: 0,0:05:17.65,0:05:19.54,Default,,0000,0000,0000,,challenges they face?
Dialogue: 0,0:05:20.14,0:05:24.30,Default,,0000,0000,0000,,Colleen: Yeah, our biggest concern has \Nbeen people missing treatments. It's very
Dialogue: 0,0:05:24.30,0:05:28.15,Default,,0000,0000,0000,,important that obviously, all of the\Nfamilies get treatments.
Dialogue: 0,0:05:28.15,0:05:31.96,Default,,0000,0000,0000,,Obviously it's understood that there's \Ngonna be some delays but we really don't
Dialogue: 0,0:05:31.96,0:05:34.04,Default,,0000,0000,0000,,want people to miss their treatments,
Dialogue: 0,0:05:34.04,0:05:39.40,Default,,0000,0000,0000,,which are so important. So that's probably\Nbeen the biggest way. Obviously, you know
Dialogue: 0,0:05:39.40,0:05:43.45,Default,,0000,0000,0000,,it's hard for families to even get to\Ngrocery stores. Families don't want to
Dialogue: 0,0:05:43.45,0:05:48.64,Default,,0000,0000,0000,,leave at all. They don't want to expose \Nany of their family members to Covid19.
Dialogue: 0,0:05:49.21,0:05:53.26,Default,,0000,0000,0000,,So they've really been struggling with\Ntrying to make sure they can get things
Dialogue: 0,0:05:53.26,0:05:58.96,Default,,0000,0000,0000,,delivered, keeping people away, trying\Nto keep doctor appointments.
Dialogue: 0,0:05:58.96,0:06:03.50,Default,,0000,0000,0000,,You know, not attending some doctors\Nappointments even though they should
Dialogue: 0,0:06:03.50,0:06:07.51,Default,,0000,0000,0000,,You know they've been really worried. So\NI'd say that that's the biggest way that
Dialogue: 0,0:06:07.51,0:06:12.44,Default,,0000,0000,0000,,it's affecting them right now. Just trying\Nto stay away from, from trying to
Dialogue: 0,0:06:12.44,0:06:14.66,Default,,0000,0000,0000,,get Covid19.