#its like somebody sneezed on u and now u are diseased and sick and need to be put in quarantine

[connectingals]

Welcome to Connecting ALS. In this episode we are focusing entirely on COVID-19 and what you need to know.

In this episode Mike and Jeremy turn to Jennifer Hjelle, executive director of The ALS Association Minnesota/North Dakota/South Dakota Chapter to facilitate a conversation about COVID-19 with Dr. Neil Thakur, Executive Vice President of Mission Strategy at The ALS Association, Dr. Lou Libby, a pulmonologist with the Providence ALS Center in Eugene, Oregon, and Kim Maginnis, Senior Vice President of Care Services at The ALS Association. If you have immediate questions or urgent matters please contact your local chapter. You can also send an e-mail to [email protected] Links: Lou Libby: http://www.alsa.org/about-us/leadership/board-of-trustees/lou-libby.html Neil Thakur: http://www.alsa.org/about-us/leadership/national-staff/neil-thakur.html Kim Maginnis: http://www.alsa.org/about-us/leadership/national-staff/kimberly-maginnis.html COVID-19 statement: https://alsadotorg.wordpress.com/2020/03/17/march-17-update-from-als-association-president-and-ceo-calaneet-balas/ This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

Transcript:

Lou Libby: I think it's important for ALS patients and their caregivers also to find some time every day for joy. There's so much bad news. There's so much scary stuff out there and it's important to find time for joy, whether it's watching Netflix or having a good meal with your family at home or playing with your dog, whatever it is, find time for it. It's a good antidote to all the bad stuff going on.

Mike Stevenson (in-studio): Hello everyone and welcome to this week's episode of Connecting ALS. I am one of your hosts, Mike Stevenson in Saint Paul, Minnesota. I'm joined by my cohost, Jeremy Holden in North Carolina. How's it going out your way, Jeremy?

Jeremy Holden (in-studio): It's going okay. Mike. Yeah, it's going okay. These are trying and anxious times for all of us, but I'm pushing through and I'm fortunate relative to a lot of folks I know.

Mike Stevenson: Right? Very much adjusting to a new normal in the world. And you and I are always practicing proper social distancing when we record the podcast. But it's something that we're all adjusting to in our work and now our everyday lives as the COVID-19 pandemic is really changing the global environment pretty much by the hour at this point.

Jeremy Holden: It is. And I, and I think that just adds to the anxiety that I think we're all feeling certainly that I'm feeling, you know, we're fortunate to live in times where technology allows us to continue to communicate, to put things like this podcast together, which is great, but it's times like these where it's brought home to me how reliant we are on those social interactions that we now have to limit and kind of pull back from.

Mike Stevenson: That's right. And particularly for those in the ALS community, I'm sure this is a nerve wracking ordeal because they are among the most vulnerable during this pandemic. And I'm sure that a lot of our listeners have questions about how COVID-19 is impacting the ALS community and what they should be doing. So we thought it was in the best interest of everyone to really discuss the global response to the pandemic and how it's impacting the ALS community. I know that last week we mentioned you'd probably be hearing from Kathleen Sheehan and Fred Degrandis about ALS advocacy, but given everything that's going on, what we really figured we should talk about this in the moment. 

So we've gathered a panel to address some of the bigger questions. You have heard from Dr. Neil Thakur, executive vice president of the ALS association, on a previous episode. He brings his epidemiology experience to the table here. You'll also be introduced to Kim Maginnis, the senior vice president of care services at the ALS association, and Dr. Lou Libby, who practice out of Oregon and specialize in ALS for many years. Facilitating the conversation will be Jennifer Hjelle, the executive director of the Minnesota/North Dakota/South Dakota chapter of The ALS Association, which is great because Jen is able to add the chapter perspective into the mix.

Jen Hjelle: Hello and welcome to a special edition of connecting ALS. My name is Jen Hjelle and I'm the executive director of the Minnesota North Dakota South Dakota chapter. Like most of you, I'm at home with my family who are obviously concerned and anxious about this new challenge we all face. I'm also really concerned about how this will impact our ALS community. And I know that's how all of our staff and volunteers feel and certainly all of you who are listening. So we wanted to get together some folks to talk about the Corona virus, which is formally known as COVID-19 and how it may impact life for people living with ALS and their caregivers and our entire ALS community. We're recording this on March 17th at 5:00 PM Eastern Time. The show will be aired on March 19th. We think it's important to note this as things are changing by the hour.

So we're working off what we know as of March 17th at 5:00 PM Eastern time and we're joined today by Dr. Neil factor, Dr. Lou Libby and Kim Maginnis. And I'm gonna start with you, Dr. Thakur. You lead our mission areas here at the Association. And Dr. Thakur is also an epidemiologist and while he's not an expert on this particular coronavirus, he's a public health researcher who got his PhD at Yale and later worked for many years at the NIH. So Neil, let's start with some of the basics. What do we know about COVID-19 [.

Neil Thakur: Well, COVID-19 is the name of the disease, the coronavirus disease identified in 2019. It's caused by the SARS-CoV-2 virus, the severe acute respiratory syndrome coronavirus 2. Some of you may remember back in 2003 there was the SARS outbreak that again originated in China and had a very rapid spread around the world. And then it kind of came under control. This disease seems to be a little bit different. It seems to be a lot more infectious. It's spread like any other respiratory disease like the flu or cold through, you know, inhaling droplets from a sneeze or shaking hands or close physical contact and it causes cold or flu like symptoms, but it is less deadly than their previous SARS disease. Because many people are able to stay infected and be active, it's transmitting a lot faster and will probably be around a lot longer than the SARS epidemic from years ago.

Jen Hjelle: Yeah. Well. And that's interesting because a lot of people are, have been comparing it to, to that. But that distinction is really, really helpful. So I'm curious, you know, I've heard a lot, and I'm sure we all are hearing about what, how this might impact the health care system. So what do you think how this is going to, how will this impact our health care system?

Neil Thakur: Well, nobody knows for sure how it's gonna impact the, the U S health system because we're just starting to see its effects. But what we've seen in other countries is when a lot of people get sick all at the same time, they start to go to the hospital and hospitals get overwhelmed. And so we have the risk of lots of people that need fairly intensive care for respiratory illnesses -- they need oxygen, they need ventilators -- and then we just don't have enough beds or capacity to treat those folks. And that's why we're placing such an emphasis on social distancing or other efforts to slow the transmission of disease, to really reduce the number of new cases happening all at once. And that allows our health system the ability to cope.

Jen Hjelle: So if we're able to kind of slow slow this down. Do you have any sense of how long this will last?

Neil Thakur: Yeah, that's also I think an open question. Then there's, there's sort of two elements to that. So one is how long are we going to be living under these strange conditions where people are telecommuting or restaurants are closed or there's difficulty and travel and I think for these more drastic or aggressive control measures. For example, I live in a state where the governor closed all the restaurants and gyms at schools. Those things are really hard for a community to tolerate. They have a lot of economic impacts. People are out of work, businesses could close, people could lose a lot of savings and that's hard. So it's hard to imagine that this is going to last for a very long time. We may be under these conditions for a matter of weeks and then go back to normal, and then go back to some additional restrictions after that. It's hard to tell. This disease could be part of what we deal with on a long-term basis like the flu, or it could be that these control measures that we're taking now make a dramatic impact in the disease and it just sort of fades away. And at this point, I don't think anyone really knows.

Jen Hjelle: Right, right. And then we will, and as we've alluded to, it's, it's changing so rapidly. So at this point, I'd like to bring in Dr. Lou Libby .Lou is a practicing physician with the Oregon clinic and the lead pulmonologist at the Providence ALS Center. He also happens to serve on the Association's, national board of trustees, which we're very grateful for. So Lou, I want to talk a little bit about, um, well a lot about the impact of this on the people we serve. So can you tell us how COVID-19 might impact somebody with ALS specifically?

Lou Libby: Sure. I'd be glad to address that. And let me just preface this with the fact that I've worked as a pulmonary and critical care physician for 35 years. But the only reason I'm able to be on this call is because I'm a nearly retired. I only do outpatient work and primarily see patients with ALS. That may change in two weeks. As Neil mentioned, things are heating up in our hospitals and what I hear from Seattle is they're getting overwhelmed, not totally overwhelmed, but they're getting a lot, a lot of business in their ICUs as we speak. 

To your question, specifically, how does COVID-19 impact someone with ALS? While the initial symptoms are pretty well known by folks, but just to reiterate, it's like any other virus or cold virus or flu virus that you've, you've probably experienced. Mainly fever, a cough which is usually dry, not always, but usually some aches and malaise or general feeling poorly and maybe some chills, things like that. Some people get a stuffed nose, some people get a sore throat. Rarely people get a little diarrhea or vomiting, but that's less common, so it's very hard to tell those symptoms apart from any other virus that causes what we call a cold or sore throat or the influenza virus, which is a very specific virus and I don't think we have any large experience with ALS patients. In fact, I have not heard of one confirmed COVID-19 ALS patient, although I'm sure they're out there and if they haven't been confirmed yet, they will be in the near future. 

So most people who get those symptoms, the COVID-19 symptoms I mentioned, it'll go away like any other cold, especially if you're young and healthy. But if you're unlucky, especially if you're older and infirm with other lung or heart disease, chronic kidney disease, diabetes, you name it, anything like that, it's more likely to lead to a viral pneumonia than the virus, which is irritating the upper airway, the nose and the throat area suddenly gets down into the lungs and causes pneumonia. And in that case there'll be more cough and probably shortness of breath. If it gets really bad blocked up the alveoli, the little areas where the oxygen goes into the blood, it blocks those up so much that oxygen can't get in the blood. And certainly by then people are going to the emergency room or in the hospital. And that can lead to everything from the need to be put on a mechanical ventilator to what's called ARDS or acute respiratory distress syndrome and even death, much more likely in the older folks than the younger folks. 

So, um, that, that's what it does in normal people. And for ALS patients, the thing we worry about the most is the fact that although their immune systems are probably okay, they have terrible difficulty with secretions and have difficulty removing secretions. It, especially if they have had involvement with their respiratory muscles and that's something almost all ALS patients have measured when they come to an ALS clinic or their doctor. So if there's any compromise of the breathing muscles, both the breathing in muscles and the cough muscles, they're going to have difficulty getting the mucus out. So they need to do everything they can to try and get that mucus out so they do not get pneumonia, and the things they can do to help get the mucus out is everything from medications like Mucinex or Guaifenecin to mechanical devices like the cough assist, uh, that people have. 

The other thing I worry a great deal about in terms of our ALS patients, especially the ALS patients who are very, very dependent on caregivers is the effect on their caregivers. Their caregivers may get sick, may be unavailable, may be afraid to come to the home. If you've got cold-like symptoms and they worry, it might be COVID-19 whether you know it or not, whether it's an earlier or late finding. So I worry about all those effects on the family and the caregivers. I'm sure other speakers are going to talk more about that as well.

Jen Hjelle: Yeah, so I'm curious, I mean this is definitely something that we've been talking about within our chapter on how we help families navigate that to the best of our ability. But I'm curious from you Lou, what, is there any certain precautions that somebody living with ALS and their family members or caregivers could take in addition to anybody out, let's say, is there anything special or other things that they can be doing to help limit their exposure to this?

Lou Libby: Well that's a, that's a great question and I've thought a little about it and I think what I would recommend to anyone with ALS, especially if they have any respiratory compromise, uh, you know, we talk about social distancing. I would recommend for ALS patients if at all possible, extreme social isolation or extreme social distancing. Obviously need your housemates and family who are live with you. You're, you're already with them. You can't distance yourself drastically from them. And same with your caregivers. You need your caregivers. But I wouldn't have anyone else in your home. I wouldn't go out to any public places except absolutely necessary places. If you need to go get your own food, fine. But if someone else can get it, great. If you need to go to the doctor, great. If you can do it by telephone, even better. So what I call extreme social distancing to help avoid the virus. That's helpful for you as an ALS patient. It's helpful for your family and it's helpful for the community in general. And then beyond that, the other things we talk a lot about is hand washing. And I'm not going to go into that. You've heard it over and over over again. There's great little videos on how to do the handwashing correctly. But I would reemphasize that to you and or your caregivers. And the one thing, and that's I don't think has been mentioned enough, is the flu shot. And if you haven't had a flu shot, now's the time to get it because if you get these symptoms and it's the flu, it's hard to know if it's the COVID-19 or if it's the flu and you hate to end up in the ER with the flu and maybe catch it from someone else who's there, who's sick. So get the flu shot so you don't get the flu and don't end up in the health care system because of that.

Jen Hjelle: Yeah. So what you're not saying, what I want to make sure that you're saying is just like the flu shot does not prevent COVID-19. But it can help prevent the flu.

Lou Libby: Absolutely. Influenza it prevents not 100% reliably, but quite reliably and is extraordinarily low risk and high high benefits. So if you haven't gotten it, please get it. I guess the other precaution is make sure you have a two to three weeks supply of your routine medications that you're taking and caregivers as you need them. Make sure they're set up to help you.

Jen Hjelle: So the thought of the extreme social distancing or social isolation as you mentioned was definitely something that's been on our mind as we think about ALS already being a somewhat isolating disease. Adding this on top of that is just a whole nother layer and I know that myself and my colleagues all over the country are having this conversation, so I think it would be great. I want to bring in Kim Maginnis to the conversation. Kim leads all of our care services efforts at the Association and Kim has also worked in the health care industry for more than three decades and including positions at the Veterans Administration and Harvard Community Health plan in Boston. So Kim and thinking about this isolation piece as one of the components I want to talk about the overall impact on caregivers and our, all of our care services. So do you have a sense of the impact of this right now across our chapter network?

Kim Maginnis: So we know that isolation in general with people living with ALS and their family and caregivers is a really big issue for them as they progress along this journey. At the beginning, people are somewhat mobile. They can get out and about, they can see their friends and colleagues. But again, as the disease progresses, the ability to do so reduces to large degrees. So in this particular situation where we have state mandates in some cases that people have to stay at home, that ability to have those social interactions, as I mentioned, really diminishes. So one of the things that we're trying to do as an association across the whole United States is to develop creative solutions that can give people that social interaction. Could be virtual for example. But we want to really pay attention to that isolation factor because we know it's so paramount in this disease.

Jen Hjelle: So Kim, those are excellent points and I know that how technology has changed has thankfully changed in a way where we have more options available to families. So what have you seen thus far in terms of what different states are doing to help people living with ALS stay connected and engaged? Are there certain resources that have been helpful?

Kim Maginnis: So in general we've seen the use of technology and you know, there's often a conversation that until there's a cure, there's technology that can help people live the best quality of life that they can live. And so what we're seeing is our chapters and our care service folks across the country really integrating technology into their everyday life. So for example, support groups is one of our key programs that we provide. It's an opportunity for not only people to get together and to share their experiences, but we also learned some of the nuances that they're going through, able to help them plan and share education materials and share information on the journey. Since we're not able to get people together because of travel issues or because of venues are actually closing their doors because they don't want folks to come in from the outside. We're learning that technology through Skyping or RingCentrals or other types of opportunities have presented themselves such that we can now have those support groups virtually and people can actually see each other on the screen.

Jen Hjelle: Yeah, I know that that's one thing that we have started doing in our chapter for our support groups. In fact, we just had had one today doing it that way and I would imagine that that is very common across the country right now. So one of the things you know that we're looking at is how we adjust every service that we provide. And one of the unique things of our organization is that we are very chapter centric. So every chapter kind of has their own set of programs and services based on the geography. So for example, what we might need to do for a family that lives in Bismarck, North Dakota is not the same as a family that might need something in Manhattan. I know that you think that the Bismarck is just like Manhattan, but they are just a stitch different. So we're looking at how we best adjust and how we can limit any exposure to folks. And I'm just wondering what have you heard, Kim, in terms of any changes in service delivery so far across the country?

Kim Maginnis: So let me use durable medical equipment as an example. We commonly refer to this program as the loan closet. And even though you made the comment about Manhattan not being Bismarck, there are absolutely access problems and challenges in big cities as well. But if we look at our loan closet, traditionally someone might need a piece of equipment and one of the staff members wonderfully would potentially drive that out to their home. Obviously with the given situation, that option is not going to be the most useful at this point. So what chapters are doing are several things. They're looking to their vendor relationships. Are there vendors on wheelchairs or other piece of equipment that they can themselves, the vendors themselves drop off to people's homes? Are the new relationships that we can build with online ordering, uh, facilities that we can drop ship pieces of equipment to people's homes? Are there ways that people can drive up to a chapter and pick up a piece of equipment that's been sterilized and and totally clean. Um, so again, the chapters have to be creative in their solutions because ALS doesn't care if there's a COVID-19 out there, ALS is going to continue its journey within a family regardless. And so the chapters are really stepping up to see what can they do creatively to make sure that people have the resources that they need to continue on.

Jen Hjelle: Yeah. Kim, you're exactly right. That's, we just had this conversation with some of our whole care services team about the fact that ALS could really care less that this is happening, but still going to do what it's going to do. You know? I know here locally we've just, we've made changes to also try to protect our staff. Like everybody else, most of our staff is working very remotely and only coming in to clean and ship a piece of equipment. We've stopped any drop-offs or deliveries or anything that would put us in contact. We would hate to, you know, obviously not on purpose, expose anybody to the virus and I am curious about that. I wanted to talk a little bit about that and and you know, I'm not sure who the best person to ask on this podcast is, but if somebody thinks that their caregiver was exposed to this virus or potentially diagnosed, are there other potential steps that need to happen, like what should that person do?

Lou Libby: I think the best thing you can do is that ask them to isolate themselves as best they can from you. If it's a person who comes in from outside, they're going to have to ideally stay at home. I know the big issue there is who's going to do the caregiving if that's your caregiver from eight to four every day, but it will have to be someone else. If it's a caregiver who lives with you, probably by the time they have symptoms they may have given it to you already. If they have symptoms and are concerned, I think they should call their primary care physician and make sure that the primary care physician is aware that they are taking care of someone with ALS who is at high risk for complications from COVID-19 and then go from there. And if you as an ALS patient have symptoms, the same thing goes. You should call your primary care physician and talk to them about your situation and what you should do. I know there's a lot of issues that come up from what I just said in there. 

Every one is slightly different and the big problem is that ALS patients are extraordinarily dependent on their caregivers. Um, and who's going to replace those caregivers? And I don't always have an answer for that. I would like to add on to your previous discussion about how the chapters are dealing with this and just reiterate that the ALS centers are, uh, certified treatment centers of excellence and the like. And there's lots of them out there and many, many patients go to them. They are also addressing this proactively: changing protocols, a almost on the fly from in-person visits to Skype visits and everything else that can be provided. I've done two FaceTime visits myself this week with patients on ventilators in their homes so that I don't have to go out there. I'm not sick, but it's just one more person entering their home with who could possibly be a carrier, so I'm doing everything I can to minimize that. I will go to the homes and go to the clinic for patients who need that, but if I can minimize my contacts, I'm doing that as as the entire ALS clinic team.

Jen Hjelle: Absolutely. I'm wondering, Lou, if you could talk a little bit, if somebody living with ALS is currently either on a trake and then using a ventilator, do they have any different scenarios they need to be concerned about? Are they safe because they already have a ventilator? How might that play into this?

Lou Libby: Well, a patient who has ALS and a tracheostomy and a ventilator, even if they're 25 years old or 35 years old and considered low risk because of their age, they are very, very high risk because of the ALS and the ventilator. The ventilator will continue to blow air and oxygen in and out of their lungs. And if their lungs are healthy, that's all they need. And as most ALS patients know, if they get to that point, they do not need extra oxygen. The 21% in the air is plenty of oxygen with a ventilator. As long as the ventilator is doing the work, the muscles can't do. But if they get the virus and it gets down in the lungs and causes pneumonia, which I think there's a significant chance of that in patients with ALS across the board, that's about 20% of patients with this virus who get a pneumonia and about 5% overall need critical care and roughly 2% dies. 

So that's just across the board. But I would think if an ALS patient got this virus, the likelihood of developing pneumonia would be much higher than that. So they should be aware of that. And I've recommended a, nearly all my patients on ventilators that they have an oximeter oximeter is O, X, I, M, E, T, E, R, and I think everyone with ALS has seen one. When they come into clinic or a doctor's office, a little clip is put on the finger and there's a little box about the size of a iPhone that reads out a number and it's the measure of the oxygen in the blood and in normal is about 94 to 97 and that's the percentage. It's actually the percentage of red blood cells that are carrying oxygen at that moment. And that's normal. It's not 100% is not normal, but a 94 to 97% is fine. Anything 90 is fine. You won't have any damage from anything at 91 or 92 or 90 or even 89 but if it's persistently under 90 something's wrong. The lungs aren't getting the oxygen in and if it's below 80 it's critical: you got to get to the hospital. 

So, so that's something to be aware of if, if you have a tracheostomy and a ventilator, um, you aren't safe from the virus, you aren't protected and the ventilator that you have can't give super high amounts of oxygen. It just gives in most cases, room air. Some patients are on a little bit of oxygen, may be 25 or 30 or 35% but with pneumonia you might, you might need 50% or even a hundred percent.

Jen Hjelle: Right.

Lou Libby: So that's a long winded answer to your question, but I would recommend ALS patients on ventilators, have an oximeter and understand how to use it.

Jen Hjelle: That's great advice and that I think that's super helpful.

Lou Libby: And they cost about $20 and you can get them at most major pharmacies, Costco and Amazon.

Jen Hjelle: Okay, well definitely it should be somewhere that could deliver, correct?

Lou Libby: Yes. Yes. Ordered it at Amazon. I have, I have one in my house because I go see patients. And I ordered a on-Amazon.

Jen Hjelle: There you go.

Lou Libby: And I got it on sale for $20

Jen Hjelle: So what other things, and this is kind of an open question to any of you that might want to jump in, but what other things should families that are living with ALS be thinking about or preparing for now?

Lou Libby: I'll just give an example of two patients I've talked to in the last four or five days. One patient talked to me last Friday, today's Tuesday, and they said, actually the patient's family said, Judy, not her true name. Judy is due to have a feeding tube placed next week. Should we delay it because of the COVID-19 the coronavirus and the possibility of COVID-19 and I had not been asked that before. And my answer basically was, you know, I think in Portland right now we have 60 to 70 cases and one death so far. So it's pretty early compared to Seattle for example. And our hospitals are not full of patients with coronavirus that has been confirmed that those are the confirmed cases I mentioned. So I said, I think it's safer to have it done now and avoid the possibility of aspiration, malnutrition and everything else that you're having it for then to wait until this virus hits us full speed in another two to four weeks it my last two to six months to, I mean, as Neil said, we don't really know how long it's gonna last, so I think you're safer right now than you would be in two weeks or four weeks or whatever. 

So I would recommend having it done now. That may be difficult for patients to hear on March 19th when they hear this, if they're close to having to need a feeding tube and they may be in areas where elective sort of things like that will not be done for a number of weeks or months. But it's, if you're in a place where coronavirus seems to be very low right now and you're facing that decision, I'd get it done sooner rather than later if you can.

Jen Hjelle: Well, I think that's valuable, valuable advice. Uh, Neil, anything that you would add to that of things that families should be considering now?

Neil Thakur: I think people should consider that the economy could be different for quite some time in the future and it may be difficult to socialize. So all the things that we've been talking about about staying in touch and planning ahead, I think are extra important now because the stress is only going to increase at least for the next few months. So people need to take extra care for them of themselves so they can be even more resilient. I think the other thing to bear in mind is the Association is paying careful attention to what's going on in Congress right now with the new budget and with the potential for stimulus and for extra protections and benefits for people with lots of medical needs like people with ALS. And so there may be extra advocacy alerts. We may too ask you to engage with Congress more to fight for, for benefits. It's harder to travel, but I think Congress understands that and they're very responsive to the ALS community.

Jen Hjelle: Yeah, and all. And it's good to mention that those action alerts and how people can engage that way is all something that you can do from your home. That's a real easy way to engage with your members. So thanks for bringing that up. I did also just want to mention, you know, depending on where you're at, know that your local chapter is there to help you the best that they can. And although I know each chapter is needing to make adjustments to how their current programming operates, they're all also looking into different ways that they can help support you. So please reach out. I believe pretty much all of us are working in remote situations, but thanks to technology, we have lots of ways we can engage with you and we want to. So I highly, highly stress that we want to be able to help you navigate and, or at least have a conversation with ya. So please reach out to your chapter if you'd like to.

Neil Thakur: So Jen, the chapters have lots of in person events, walks and galas and other kinds of activities. And not only are they important for sustaining operations, but they're also sometimes social events and for the ALS community and this COVID-19 of course is impacting our ability to have those events. And so what are you planning to do to keep people together to keep programs going? How do you plan to keep things moving?

Jen Hjelle: That's a great question and it is definitely something we're all talking about pretty much all day long right now. You know, many chapters have events that were supposed to happen this month, next month, in the next few months. And you're right, these events just aren't about fundraising. Our walks are, I think one of the greatest tools we have to bring the ALS community together and really inspire the community to support one another. And people consider it like the, there was one of their favorite days of the year when they can mobilize everybody. So not being able to have that physical presence is something that is just, it's a huge bummer. I mean, let's just call it what it is. It's, it's very sad. 

And so right now, I mean the good news is our staff, and I know all the other chapter staffs are doing whatever they can to come up with ways that we can make those events virtual and modify them in a way where we can create opportunities for connection and inspiration and to be able to really help people continue to support the ALS community. Because in times like these, you know what's called upon by not just our organization, but any nonprofit is this is the time where we got to step up even more to support people. 

So having that financial support is also a really imperative. And that's just, that's just the reality. And it's also a really difficult thing to talk through right now when we're going through this. But what I do know and what I feel very confident in, not only with my own staff, but chapter staff across the country, is this is only fueling our fire to do whatever we can to come up with new and creative ways. Really think about how we can not just support our community, but really come together and not back down from this. So that's, that's our, our number one priority right now and I would expect that over the next days and weeks that the great chapter staff around the country is going to come up with just fascinating and innovative ways that we can not only bring people together but continue to really fight ALS.

Neil Thakur: I'm hearing that too, Jen. I'm hearing all around the country working really, really hard and coming up with some really interesting ideas to fight this and to support our community.

Jen Hjelle: I'd like to thank Kim and Dr. Libby and Dr. Thakur for joining us today and sharing their insights and experiences. I fully expect we'll have future episodes on the coronavirus and we want to answer all of your questions. So if you have immediate questions or urgent matters, please contact your local chapter. But you can also send an email to [email protected]. In the meantime, please stay safe and know that we are all here working even harder to serve, advocate for and empower everyone affected by ALS.

Jeremy Holden (in-studio): Thanks to everybody for that fascinating conversation. Very informative, not surprising. And obviously this is an ongoing story that we are going to be staying on top of here at Connecting ALS. We are going to remain flexible with what we're bringing to you. We have lots of great stories lined up, but as the COVID-19 pandemic story develops and as new information emerges, we are going to be bringing that to you as we can.

Mike Stevenson (in-studio): That's a really good point. Jeremy. As we said at the top, this really is changing our lease, so by the time you're listening to this podcast, there may be new information available. We'll do our best to make sure you have that information and the related response from The ALS Association. Please remember to adhere to best practices when it comes to social distancing and self quarantining when necessary. I know that our experts did get into that a little bit. We'll be linking to the CDCs recommendations in the show notes, but obviously we want everyone to stay safe and and consider how your actions may have an impact on the greater ALS community.

Don't forget to subscribe to Connecting ALS wherever you get your podcasts or at connectingals.org and to follow the podcast on Facebook and Twitter to make sure you're getting all of the latest content. Speaking of Facebook and Twitter, if you do have questions about today's episode or just about the pandemic in general, or really about anything that we discuss on Connecting ALS, feel free to find us on social media and leave your questions in the comments or send us a direct message and we will do our best to either discuss it on a future episode or get back to you individually. 

This episode was produced by Garrett Tiedemann of The ALS Association, Minnesota, North Dakota, South Dakota chapter. Thank you all for listening. We'll connect with you again next Thursday.

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