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SkiP HappEns Podcast
Beyond Lou Gehrig: What Everyone Should Know About ALS Today
"The gift of this disease is I know what's coming and I have the gift of leaving nothing undone and nothing unsaid." Powerful insights from ALS patients and how cutting-edge tech like brain-computer interfaces are transforming lives. Listen now. #ALSawareness
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Hello everybody and welcome to the Inner Harbor cast. My name is Skip Clark and I'm your host this morning. We are your go-to spot for the stories and leaders building our Syracuse community, and today we're honored to have a guest whose impact reaches far beyond the boardroom, so to speak. Joining us is Liz Crisanda. She is the regional vice president and a passionate advocate for the ALS Association. In addition to her impressive track record of driving regional growth and innovation, liz dedicates her time to supporting families and advancing research in the fight against ALS, a cause that touches countless lives. Liz, it's so good to see you, welcome, welcome back.
Speaker 2:Well, thank you very much for having me back. I am glad to be here.
Speaker 1:You know, it's so good to see you and it's always some great information For listeners unfamiliar with ALS, how would you explain what it is in simple terms?
Speaker 2:Simple terms.
Speaker 1:Okay.
Speaker 2:So ALS stands for amyotrophic lateral sclerosis, so try saying that three times fast. Will not, and what it actually means is that the nerves actually on the side of your spinal cord lose nourishment and they wither and die, and these are the nerve endings that transmit impulses from your brain to your voluntary motor functions. So that would mean, like your fingers and toes, any movement you have. And then one of the things that people don't think about is breathing. Breathing is actually a voluntary motor function, unlike your digestive system or your heart.
Speaker 1:I would say, because the way you just described it, that it's pretty much it's a progressive disease and it's probably or possibly quicker in some individuals than it is others. Is that correct to say?
Speaker 2:That is correct, and so there are a couple kinds of ALS. There's one that's called sporadic ALS, which is something where there's not a genetic known component. There's also what we call bulbar ALS or limb onset, and so someone who has bulbar onset ALS actually loses their ability to swallow and speak. First people who have limb onset ALS. What happens is they start losing the sensation and movement in their fingers and in their toes, and then it actually works its way upward into their body until their diaphragm is affected.
Speaker 1:Well, what are some of the early symptoms of ALS?
Speaker 2:So early symptoms, like I said, would be weakness in your hands and your feet. Oftentimes people with ALS are misdiagnosed or don't see those symptoms for what they are. We've seen patients who've been referred to like orthopedic surgeons for like a pinched nerve in their back or their neck or for someone who is in middle age. They'll say, well, it's because of my job, or it's like a like an overuse. I'm getting old and so I'm starting to see that kind of thing will get treatment for other things. The treatment is not working. They continue to progress and then eventually we'll get a referral to a neurologist who will then diagnose ALS. Als is a disease that you get diagnosed by ruling everything else out, but there's no single test for this.
Speaker 2:Right now there is no single test. There are a couple kinds of ALS that we know are connected to a specific gene and so if you can get a gene test for that and you can identify that gene once the SOD1 gene, or there's what we call a C9 ORF gene, those we know. But people who have a genetic form of ALS are often not surprised because it is rife through their families and so they'll have it in many generations.
Speaker 1:Is this still a mystery as to what causes it, or do we have an idea of some of the causes now?
Speaker 2:We do so since the ice bucket challenge we have identified over 40 genes that we know are associated with ALS. There are a couple of the ones I mentioned that we know can cause ALS. Doesn't mean it will, but it can. We've had an instance where we had twins One twin developed ALS, the other twin did not. But what we're really looking at now is a genetic predisposition and then what could be an environmental trigger, and we do have some ideas of things we know are associated, but we haven't definitively linked them.
Speaker 1:Gotcha. Let's talk a little bit about the treatment in living with ALS With no known cure. What treatment options are currently available for ALS patients?
Speaker 2:So there are a couple drugs that are on the market. One is Riluzol, the other is what's known as Radacava that came on the market, I think, in 2017, which has been shown to slow the progression of ALS, but we don't know it's not the same for everybody and how long that would be. There is a new drug on the market called Kelsadi, which is for one of the specific genes I mentioned, and that drug has been shown not only to delay ALS, but in some cases it's been shown to restore function for ALS. There's another gene called the FUS gene, where there's a drug in clinical trial that's also showing the same thing that function can be restored. That's something that up until two years ago, we didn't even think was possible, so it's really opening a lot of doors?
Speaker 1:Yeah. What types of supportive care is available?
Speaker 2:So one of the things that the ALS Association does is we work with the families in how to translate what their medical teams are telling them. How to make that happen in a home. One of the most important things we do is make sure that people go to a multidisciplinary clinic. There are two certified treatment centers of excellence in Syracuse. They're the only two in upstate New York. It's like one-stop shop where they see all the therapists they need, whether it's a physical therapist, a nutritionist or breathing pulmonologist, all of that. So in terms of the treatment, it's making sure they're living as well as possible so that they're getting the right kind of support for nutrition.
Speaker 2:Are they getting the right if? When they need a rollator? Do they need a walker? Do they need home modifications? Do they need one of those complex power wheelchairs that you see? Will they need speech generating devices, like when you think of Stephen Hawking and you think about the chair and you think about the computer, that kind of thing, and insurance covers that. However, there's a copay for that, and so for some people the copay is too expensive. We have a lot of loaner devices that we use. We also work with a lot of vendors on ramping and transportation, all of it. How do you live with this disease?
Speaker 1:Exactly, exactly. How do the caregivers and, let's say, some of the medical teams, how do they manage? You know the emotional and physical toll that the patient has. It is hard.
Speaker 2:I won't say you know, in the clinic staff that I've talked to even our staff it can take a toll on you. On the other hand, what I often hear from our staff is it's really an honor, it's a privilege to help people go through this journey and that we're helping this journey be less traumatic or as least traumatic as we can help make it for them so that they can spend their time living not worrying about an insurance denial, not worrying about when this piece of equipment is going to be delivered. Is it going to be the right piece of equipment?
Speaker 1:You shouldn't have to worry about any of that.
Speaker 2:You shouldn't have to or even problem solving. We recently had a case where their goal was to get to their daughter's wedding, and so what are all the things that needed to be in place to get into this wedding? It's the transportation. It's ramping to get into the facility. Is there an accessible bathroom? So our care service providers are like go to the venue, Figure it out. Help the family figure it out, because they can see around the corners.
Speaker 1:They don't know where they are and you're watching the progression of somebody too, and that's got to be just emotionally draining on somebody, because we know it's coming and they do not.
Speaker 2:So, how do we help prepare them for that without traumatizing them Exactly?
Speaker 1:Well, just to be the best friend you just got to hang out.
Speaker 2:It takes a special kind of person to do the work it does.
Speaker 1:Let's talk a little bit about some of the facts and all that. How many people in the US are diagnosed with ALS each year? An approximate figure, I know it's in the thousands.
Speaker 2:It's in the thousands. So about 6,000 new diagnoses are made every year and the number of people living with ALS is starting to increase. Because people are not dying as early as they used to, oftentimes because one, we've got some drugs, that slow progression feeding tube. People just say no, I'm not going to do that, it's easier to do now. So they're living longer and they're living better.
Speaker 1:And how does that number compare to numbers with other diseases?
Speaker 2:We're still a relatively rare disease. But you know what. We say that. But then I talk to people and almost everyone I talk to knows someone who had ALS.
Speaker 1:Because I think we're being made more aware of ALS. We hear it on the news, it doesn't matter what we're watching.
Speaker 2:Chances are you're going to hear about ALS more so now than ever before More so now than ever, and one of the things that we've learned at the ALS Association is that some neurologists can spend their entire career and never see a case of ALS or not know what they're seeing, and so we created a Think ALS tool that we're working with clinics and physicians and regular doctors and orthopedics of. If you've got this symptom and this symptom added to this symptom, you need to Think ALS, get them referred, because if they can get referred early one, they're getting care early. Also they're eligible for a clinical trial earlier, and so that benefits everybody.
Speaker 1:You know, as we know, ALS does not discriminate, so that makes you want your awareness to be out there. You want it to be better known obviously so you know, it's been found. I'm reading some of my notes here it's been found that military veterans are twice as likely to develop ALS. Do we know why?
Speaker 2:Not yet. Not yet it's helped us look at the idea of environmental trigger for a genetic predisposition. But ALS is actually one of a few presumptive disabilities, which means that if a veteran who has seen active duty develops ALS, it's considered a 100% service-connected disability and they get all the benefits that come along with that, so that actually relieves a lot of their burden, their financial burdens, et cetera. The Department of Defense also has a specific research program that's dedicated to looking for a cure for this, because if we can figure out why veterans are getting it, that'll help us figure out why other people are getting it as well.
Speaker 1:No, I love to talk baseball.
Speaker 2:Okay.
Speaker 1:All right, lou Gehrig, all right, all right. And of course it's called Lou Gehrig's disease. For those that may not know and I'm sure there's some that do not who was Lou Gehrig Lou, some that do not, who was Lou Gehrig Lou.
Speaker 2:Gehrig was the pride of the Yankees. I was waiting for that. Producer Steve loves that too. He was the pride of the Yankees and so he was diagnosed with ALS and he passed away in 1939. And he was one of the few athletes I think he was one of the first athletes who was very public with his disease. He made sure people knew he had his disease. He didn't hide his disease and was really committed to living with it, which, again, it's Lou Gehrig's disease. Now it's interesting in the United States ALS is known as Lou Gehrig's disease or ALS. In the rest of the world it's called motor neuron disease. Really, I did not know that.
Speaker 1:I didn't know that until I started the ALS Association. Which, by the way, how long have you been there?
Speaker 2:Almost 10 years. Yeah, wow, almost 10 years. I started as an executive director in the upstate New York chapter and I've continued with the association.
Speaker 1:Yeah, I love it. I can see the smile on your face. Just it tells me how dedicated it is and how passionate you are.
Speaker 2:I came to this position because I actually had a friend who had ALS and watched his progression with ALS and he was one of the most courageous people that I had ever met and, to be honest with you, this was my way of paying it forward. He was a great friend to our family and then, once I started doing this work, everybody I met was incredibly inspirational. I hope, or wish, that I would have the courage and the grace to navigate the disease that I see our families and our caregivers do.
Speaker 1:Lou Gehrig, the luckiest man on earth. Tell me a little bit about that speech.
Speaker 2:Well, it was one of the speeches that people were surprised to hear him make, actually, because what he did and it showed his outlook. He said, yeah, this is a horrible break, it's a bad break I've been given, but then he talked about all the blessings that he had in his life. And our families often do that as well. And I will never forget a person with ALS that once said to me the gift of this disease and kind of had a hard time wrapping my head around that, his that statement, and he said but the gift of this disease is I know what's coming and I have the gift of leaving nothing undone and nothing unsaid. And that guides my work, because what can we do to make sure that happens?
Speaker 1:And you know to have the guts to get up there and do that and talk about that and be open about that. And if you listen to it word for word for word, it just it's, it's the real deal.
Speaker 2:It is. It is oftentimes ballparks on Lou Gehrig's day which is June 4th. If they have a game, they'll play that I love it.
Speaker 1:What current research or clinical trials give you hope for the future ALS treatment?
Speaker 2:A lot of the genetic trials, what we call antisense technology. Antisense technology is what people would think of as designer DNA. You see it in the cancer space, where you have a particular gene and then you create a treatment that targets that particular gene. That's really exciting. The other research we're seeing is assistive technology, which helps people live better, and one of the things I think about. There's a company in New York state called Synchron that's doing computer brain interface training. People will think about Neuralink.
Speaker 2:Elon Musk is doing Neuralink. It's actually believe it or not. It's like this teeny tiny stent, this big, that goes into a vein in your head, in your brain, and what we're finding is people can control their voice generating devices with it. They can control their wheelchairs with it. We would love to be able to see them control their environments, like turn lights on and off, move around their facility. It's great for them. It gives them independence. It also relieves their caregiver of having to do everything for them, and so that's super exciting. But I don't know how these 12-year-olds at MIT can think of this.
Speaker 1:So this is in the works right now.
Speaker 2:It's in the works. Right now. We actually have two patients in New York State that have it.
Speaker 1:They have like a trial going on. They have a trial.
Speaker 2:And it's Bluetooth technology. There's nothing attached to them, it's Bluetooth technology.
Speaker 1:I love that. I love that. How can listeners support ALS? What can we do?
Speaker 2:So there are a couple of ways. One is if you go to wwwalsorg, you can learn about ALS. Everything that I've talked about is there. It's also if you're in New York State. It geolocates to New York State so you can see what we're doing here. If you have ALS or know someone, it talks about our clinics, it tells you who to contact, talks about the programs that we offer. We have two fundraising events coming up in.
Speaker 1:Central, new York. Talk to me.
Speaker 2:We have the Syracuse CEO Soak, which is August 21st, where we are bringing community leaders who we are fundraising for us into the Clinton Fountain where we soak them. It's kind of our take on the Ice Bucket Challenge.
Speaker 1:I hope my boss is listening.
Speaker 2:I hope so too. Give me his number and I will call him on the Ice Bucket Challenge.
Speaker 1:I hope my boss is listening. I hope so, to give me his number and I will call him. I will do that when we get off the air. Absolutely, that would be great.
Speaker 2:And then we also have the Syracuse Walk to Defeat ALS, which is September 27th. Yeah wow.
Speaker 1:So those are the two big ones right now. That's what for the remainder of this year. Yep, I love that. What about if somebody wanted to volunteer? Now you're talking about these events, but I would assume you need individuals to help out.
Speaker 2:So there's one, you can go to the website and there's a volunteer form that you can fill out. Or, if you wanted to go on to our website and look for the name of a gentleman named Nicholas Morsiglio he is our development manager and his phone number is there and call him, email him, say I want to help, say I want to help, I want to be in touch. Absolutely, we need volunteers to help with all of our events.
Speaker 1:I love that. What about a donation Tax deductible?
Speaker 2:Tax deductible, ALSorg, and again, those gifts are geolocated so if it comes to New York it's allocated to be invested here.
Speaker 1:I love this question. If you could clear up one common myth or misunderstanding about ALS, what would it be?
Speaker 2:Oh my gosh, that, although I would say the average life expectancy for someone with ALS is one to three years, more than half of the people that we work with live longer than five years. That's awesome and again, and with new treatments, we're going to extend it and again, we're going to keep fighting for the cure.
Speaker 1:Yeah, Liz. If there's one thing you want people to remember most after listening and viewing this podcast, or listening to it on air one of our four great radio stations, what would that be?
Speaker 2:I want people to remember that Syracuse is such a great community that supports the community, and so please continue to support us and other organizations, because families are really counting on the support. Als is such an isolating disease and it's important for all of our families not to feel isolated.
Speaker 1:I love what you do. Thank you so much. I love what I do. I can tell, Like I said a few minutes ago, the smile on your face, the passion and dedication to help others ALS. You know Liz Cassandra right, Did I say that? Right you did. She is the regional vice president, of course, for the ALS Association right here in central New York, and you've got a big region to cover too, from what I understand.
Speaker 2:New York, new Jersey and all of New.
Speaker 1:England. Yeah, you put the miles on the car, absolutely.
Speaker 2:Absolutely, but I live here in Syracuse. Well there you go.
Speaker 1:Well, thank you for coming in and thank you for explaining a lot about ALS that many of us did not know, and we love you, my pleasure.
Speaker 2:Anytime, have me back and I'll see you in the fountain.
Speaker 1:I'm going to give you my boss's phone number, but no, I would love to be a part of that as well, we'll have to come. Yeah, we'll definitely do that. All right, thanks for watching. It is the Inner Harbor cast and it's all part of the Community Connection, our and it's all part of the community connection Our four great radio stations. Thank you.
Speaker 2:Thank you very much.
Speaker 1:Yep end stream and then that should be loaded. I'll get this.
