Subscribe
Share
Share
Embed
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Heather Ansley:
It really is a safety issue when your wheelchair is destroyed or when you are bumped and bruised and dropped in the transfer process. This is not frustration. This is something that must be addressed because passengers with disabilities deserve the ability to fly safely, just like millions of other people every day who take to the air.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden.
Summertime conjures up a litany of images in the mind. Summer Camp, beach blankets, grills, the pool, ball games, blockbuster movies. For many in the ALS community, summer also brings with it the imagery of ice buckets. It was nine years ago that 17 million people came together to create a viral sensation that changed the world, uploading videos of themselves pouring buckets of ice water on their heads, and collectively raising critical funds for the fight against ALS.
In the years since the ALS Ice Bucket Challenge, the ALS Association has committed 138 million dollars to research projects around the world. Now, the impact of the Ice Bucket Challenge is being highlighted in a new article in National Geographic. "Researchers," the article notes, "Are still trying to understand how the disease works, what biomarkers can help diagnose and treat it, and the role genetics plays both in the 10% of cases where people have a family history of the disease and the 90% of those without that family history who suffer from sporadic ALS. A better understanding of what genes contribute to the disease could ultimately lead to the development of effective treatments. It took 126 years to find the first therapy for the disease, Riluzole, which can extend patients' lives by about three months. That was in 1995 and it took 16 years to approve another treatment, Nuedexta, in 2011. Then the Ice Bucket Challenge happened in 2014." End quote.
The article goes on to discuss the new drugs that have been approved since the Ice Bucket Challenge. "Most profoundly," the article states, "The Ice Bucket Challenge led to an influx of new treatments by accelerating research already in progress before that summer. In 2017, the FDA approved Radicava, a drug that prevents nerve damage and slows ALS progression. Five years later, Relyvrio, which prevents nerve cell death by blocking stress signals in cells, gained approval. And in April 2023, the agency gave conditional approval to QALSODY, which shuts down the production of a toxic protein in the SOD1 gene, the first ever treatment for a rare form of the disease."
Now, you should check out the link in the show notes and read the full National Geographic piece. It's truly great. Meanwhile, a recent article in the New Yorker takes a deep dive into the drug approval process at the Food and Drug Administration through the fight for approval of AMX0035.
Calling the Ice Bucket Challenge one of the past decades' feel-good social media sensations, staff writer Gideon Lewis-Kraus writes, "In the pre-challenge era, research was largely fruitless. The only drug on the market had been approved in 1995, but the viral campaign generated 200 million dollars in aggregate donations and one clinician hailed a new era in which she could talk to patients with more hope." Lewis Kraus goes on to detail the history of the FDA's approach to approving drugs, lays out the advocacy work that went into the fight for the approval of AMX0035. It's a worthwhile read. We can share a link to that article as well in the show notes, but please know that a subscription is required to access the full piece.
Well, last week the ALS Association launched two new grant funding opportunities designed to support research focused on better management of the disease and reduction of its complications. These grants, worth several million dollars over the next two years, will fund the development of new assistive technologies and strengthen the quality of ALS care. The association's newly launched assistive technology grants will provide up to $400,000 over two years to accelerate the development of innovative technologies or the adaptation of existing technologies that can help maintain or improve the health, independence, or quality of life for people living with ALS.
And the association's new quality of care research awards are designed to spark collaborations between ALS clinical science, implementation science, quality improvement, and health services researchers to make ALS care safer, of higher quality, more accessible, more equitable, and more affordable. And we will share a link in the show notes so you can learn more about those new research grants.
Well, as we mentioned at the top, summer officially arrived last week, which, for me, conjures memories of family vacations past. So this week we're reflecting back on conversations we had last summer with Maceo Carter about some of the challenges he faced while living with ALS and with Ainsley Carter of the Paralyzed Veterans of America, about ways that public policy can make it easier to travel while living with ALS.
Maceo, thank you so much for your time this week and for bringing your story to Connecting ALS.
Maceo Carter:
No problem. Thanks for having me.
Jeremy Holden:
Just to kind of get things started, could you maybe introduce yourself to listeners and tell us a little bit about your connection to ALS?
Maceo Carter:
Sure. My name is Maceo Carter. I was diagnosed with ALS on November the eighth, 2016. I was diagnosed in Charlotte, North Carolina. My family and I moved to Arizona maybe seven months after the diagnosis, to help be seen at Mayo Clinic and things of that nature. And so I'm going on six years now of living with this fun disease.
Jeremy Holden:
Well, sorry, our paths crossed because of that. You recently wrote a piece for Arizona Central, talking about some travel hassles that you dealt with. Could you tell us a little bit about your trip to Denver and what went wrong there?
Maceo Carter:
How much time do we have?
Jeremy Holden:
Yeah.
Maceo Carter:
So we were traveling from Phoenix to Denver for a neurodegenerative conference and we were asked to come and speak regarding the mental health aspect of living with a terminal disease. It's the first time we had been on a plane in over two years. It was my wife, myself, our niece, and our two-year-old son, which, it was his first time flying.
We called the airline in advance to give them the measurements of our chair. I have a Quantum iLevel chair that I travel with. So we called them in advance, gave them the information, the height, width of the chair. Thankfully, without even asking, the customer service agent upgraded my seat to business class. So it was like right behind first class, which was amazing. We got to the terminal. They were very helpful at the gate. Everybody tagged the chair and helped us along. Got onto the plane with no problem. Got to Denver with no problem. And once we got to Denver, two gentlemen came, helped me out of my seat and literally helped walked me off of the plane and it was a great experience until we got off the plane and I could see steam coming from my wife's ear because they had broken my chair, which was the biggest fear of traveling, was what would happen if they broke the chair? And they did.
Jeremy Holden:
Yeah, that's frustrating. I can see the steam in my mind. So what happens then? You have an inoperable chair. You're at the Denver airport. You've got a conference coming up. What happens next?
Maceo Carter:
So, from there, everybody at the airport pretty much were very empathetic, understanding of the situation to an extent. We get the baggage claim, fill out all the information. We're there for a while, about an hour and a half, close to two hours. Finally, we get to the hotel because the [inaudible 00:08:04] rented us an accessible van, which was kind of rough because now I'm not traveling with a chair now, so I had to sit in a regular seat. When we got to the hotel, the hotel had your standard wheelchair, which I had to find a way to get into that, roll into the room. And now it took about an hour and a half for my wife is trying to figure out how to get me out of the chair. She called someone to come help her get me out of the chair. Mind you, I'm 6'1, 230. We finally get out of the chair. I can't sit in the hotel chair.
Speaker 4:
I am not 6'1, 230.
Jeremy Holden:
For our listeners, Maceo's wife is off-screen. But just dealing with the size discrepancy, it just adds another wrinkle to a very chaotic and undoubtedly frustrating situation.
Maceo Carter:
Exactly.
Jeremy Holden:
Yeah.
Maceo Carter:
So I couldn't sit in the chair at the desk in the room. I couldn't sit in the couch in the room, because I couldn't get up. I couldn't necessarily sit on the bed because every time I got on the bed she would have to help me out the bed. So we made a pallet on a counter for me to sit on. So I sat on that for four hours until the foundation sent a rental chair over to us. This was the first night.
The second day, which was the first day of the conference, we went and sat there for three hours. Now, mind you, the chair that they gave me was kind of a chair that you get in the grocery store, but the back of it stops at right in the middle of your back. And I'm sitting in this for six hours and it's smaller than my chair, so I'm crunched up and in a lot of pain. We had to leave the conference early because I couldn't sit that much longer, which, when we left, I was already scheduled to speak, but I had to miss that speaking [inaudible 00:10:05] because of the pain.
The whole reason why we came was to speak for that. The whole time my wife is going back and forth with the airline regarding how they're going to fix the chair. Can they get the chair fixed while we're there? Or if they would have to send it back to Phoenix to get it fixed. Second day, this is now Friday. They say that somebody's going to come and try to fix the chair. Before that, I forgot this part. Thursday while we're at the conference, they brought my chair back without fixing it. While we were at a conference. How did this happen, you might ask. Sure, I'll tell you.
Jeremy Holden:
Yes.
Maceo Carter:
Our niece just so happened to be in our room at the time. Front desk called the room. She answered the phone and said, "Hey, your chair is here." She said, "What chair? Is it the replacement?" They said, "We don't know. It's just a chair is here." She goes to the front. My chair is there with no paperwork. They push into the room. Mind you, they cut the cord on the back of the chair. So the way my chair is set up, because my arms suck because of this fun disease, I can move my chair with sensors on my knees. But when you cut that cord from the head, that cuts everything. So they returned the chair with a piece of tape on the cord.
Jeremy Holden:
Yeah.
Maceo Carter:
Now, I can see your face and I'm thinking you're probably asking, "Well, what kind of tape did they add? Was it normal electrical tape?" No sir, Jeremy. It was regular white tape.
Speaker 4:
It was Scotch tape.
Maceo Carter:
Regular Scotch tape, which I would think is a fire hazard, but nevermind that part.
Jeremy Holden:
And certainly not an effective fix.
Maceo Carter:
[inaudible 00:11:55].
Jeremy Holden:
Right.
Maceo Carter:
So, Friday they said that somebody's going to come and try to fix the chair. This is midday, so it's like one o'clock. We're already missing half of the conference. The gentleman comes, looks at it, and it takes him, and I'm being generous, 10 minutes to move the wire somewhere else to get it halfway fixed. This is Friday. So from Wednesday to Friday, we're going back and forth, thinking that they can't fix it because it's such a specialized chair, so it's going to be sent to Phoenix. It might be fixed, it can't be fixed, to somebody being able to fix it in 10 minutes.
Jeremy Holden:
Yeah.
Maceo Carter:
That's Friday.
Jeremy Holden:
There's a lot of 10 minute windows in between Wednesday and Friday where this could have happened, right?
Maceo Carter:
Yeah. So, everything is fine from that point because now I'm able to use my chair. I'm able to actually get out and see the town, which we were there to see. But in the back of my mind and all of our minds, we had to go back and fly. Now, honestly, I asked the driver that the [inaudible 00:13:07] used for us if she could drive us back. And I say jokingly, but I was like, I'm very serious, "You think that y'all might be able to drive me back, because I don't want to fly." She said, "Ha ha, I can't." Okay, well I tried.
Jeremy Holden:
Yeah. Well, and I think one of the points that you make in the piece you wrote for AZ Central is that there's legislation pending before Congress. We're going to talk to somebody a little while later about where that bill is and what it would do. But being able to fly, being able to travel, whether it's for a conference, whether it's for leisure, whether it's to go see family, shouldn't have this added level of stress and what's going to happen to my chair?
Maceo Carter:
Let me ask you a question. When you're booking a flight, what are your normal fears when you book a flight?
Jeremy Holden:
Recognizing my privilege in this world, I don't want to be in the middle seat. I mean those are like, I don't want the flight to be late. I don't want to be in that middle seat where I'm fighting for elbow space. My fears and concerns are negligible, I will readily acknowledge.
Maceo Carter:
Right. So those are, I would say, common fears. My and every disabled person who travels with a wheelchair, our fear and first fear is what happens if and when they break this chair, which is equal to breaking my legs. The funny thing that I've seen and heard since this has happened is mine is not the only story, but the only difference is that the story is coming from different people, but the denominator is still the same. When you break this chair, you're breaking my legs. So that would be like if you knew you're going to Hawaii, you're going to work out so that you can walk on the beach. But now all of a sudden when you get to Hawaii, both of your legs are broke. What are you supposed to do then?
Jeremy Holden:
Yeah.
Maceo Carter:
It's very comparable to that.
Jeremy Holden:
You were scheduled to speak in Denver about the mental health aspect of living with a terminal disease. What message were you bringing to that conference? Talk to me a little bit about the mental health aspect of living with a terminal disease.
Maceo Carter:
Well, for me, it was mainly idea and a message of holding on to things that you have. Progressions with this disease differ. Some people, like I said, I'm going, knock on wood, I'm going on six years. Some people and their progressions are faster. So it was just a matter of holding on to the things.
I used to cook a lot. That's why I used to be fat. I can't cook anymore, but I love Food Network. I've watched every Guy Fieri show there is. It's things that I can't do, but I still hold onto those things and I watch those things because I can still enjoy it, although I can't. Might not be able to do it the same. So it's things like that, just knowing the people that you can reach out to, knowing that it's okay to feel bad. Understanding the rollercoaster that is your everyday dealing with this disease. You're going to be happy sometimes. Sometimes you're going to feel completely lost and down and those things are fine because it happens. The burden that you might feel that you're causing other people around you, the helplessness that you might feel, the sense of empowerment that you feel from being able to do what you can do, appreciating what you can do while you can do it, things of that nature.
Jeremy Holden:
You recently talked with Chelsea Carter. I think it was with an I AM ALS forum where you were talking about diversity in the ALS community.
Maceo Carter:
Right.
Jeremy Holden:
Talk to me a little bit about your experience and your observations about diversity in community and maybe the need to raise awareness there.
Maceo Carter:
That was a great conversation.
Jeremy Holden:
It was, and we'll share a link to that in the show notes so folks can watch it because it really was a very moving and meaningful conversation.
Maceo Carter:
What's cool with being in Arizona, obviously, is the weather, minus the summertime. But the one thing, there's a lot of resources here for the ALS community and the ALS Association chapter here is very amazing. They provide a lot of things. Services for the family, services for the PALS, the [inaudible 00:17:32], so on and so forth. But the one thing that I noticed immediately is that I'm the only person that looks like me in this community. So, other than the disease, there's no one else for me to turn to, that we can talk about things that we can relate to.
Jeremy Holden:
Yeah.
Maceo Carter:
And just in how, to me, it's presented. A lot of times to me, ALS is presented like a older white male disease, which is not the case. I'm not either of those. I know kids who have the disease. I know women who have the disease, so it's not just a one look. I like to say ALS is not just dot, dot, dot.
So the conversation was, for me, was hopefully to show that African Americans can and do have this disease and we can do live with it, in hopes that, that sparks someone or people to want to get into different fields to kind of help battle the disease.
Jeremy Holden:
How long ago was the flight to Denver?
Maceo Carter:
June 15th.
Jeremy Holden:
Okay. So, what, about six weeks ago, I guess? If an opportunity arose for you to attend another conference and it involves getting on a plane, what's your thought process? Are you ready to get back up in the skies and just assume this was a one-off deal? Or do you need more evidence that airlines and that the travel industry is taking some issues seriously and really kind of changing their approach?
Maceo Carter:
I'm going to keep my answer as clean as possible. So there is no way in the heel I want to get back on a plane. And what sucks about that is, during the situation, my wife said, "This trip has broken my husband." I'm prideful to an extent, so I didn't like the idea of saying that this broke me, but the idea of getting on a plane again, there's no way in the world I want to do it because there's no recourse from the airlines to their actions, in my opinion.
They're able to, whatever happens, happens. "Oh, we broke the chair." And things happen, but it's just like, "Oh, we broke the chair. We got your replacement while you're here. We're working on getting your chair fixed. Is there anything else we can do?" Yes, you can load these chairs better. You can train people better on how to handle these chairs that are extensions of our bodies.
No, I wouldn't fly at all. And that sucks. That sucks because we're from the east coast, from North Carolina to New York, all up and down the 95 corridor. There's no way in the world I would want to fly back.
Jeremy Holden:
And when we think about empowering people living with ALS, who kind of live life on their own terms, live life to the fullest, taking away the ability to travel to see family is certainly something that needs to be addressed.
Maceo Carter:
The thing with these chairs is they're not a toy. They're not just something to have. It's a lot safer for me to sit in my chair and go from one end of an airport to another and then stand up and walk from one place to another because of this chair. If I tried to walk that, that's dangerous. That's what these chairs are. And it just really feels like, minus the PR lip service that you get from these airlines, they don't really care, because, again, there's no recourse.
Jeremy Holden:
I think you said in your piece and you said it today, this isn't a one-time thing. This is something that happens and there's data out there suggesting how frequently incidents like this happen.
Maceo Carter:
This is my second flight with the second airline with the second chair broke.
Jeremy Holden:
Yeah.
Maceo Carter:
That's just me. Now, I can go on and on about the stories of someone in Florida who said that their chair was broken five times. I can go on about a story about a Paralympic team in DC, a team of children, who came back from a tournament, seven of their chairs were broken. There's all kinds of stories. I read a story of a man who traveled from New York to Ireland and they left his chair in New York, and then when they delivered it to him, it was broken.
Jeremy Holden:
Yeah. Well, the hope I suppose is that by sharing your story and by sharing other stories like it, that maybe we can spur on some change. And I know we're going to be talking in a moment with Paralyzed Veterans of America about a bill in Congress that may do just that. But, Maceo, I really want to thank you for your time today and for sharing your story with us.
Maceo Carter:
Absolutely. Thank you for having me again.
Jeremy Holden:
We now turn to Heather Ansley, associate executive director of the Paralyzed Veterans of America for insight into what's being done to reduce the harms associated with flying while living with ALS.
Well, Heather, thanks so much for being with us and coming back to Connecting ALS.
Heather Ansley:
Well, thank you, Jeremy. It's wonderful to be able to be on the show today.
Jeremy Holden:
Yeah, covering some somewhat familiar ground, you were last on, I believe, it was back in February of 2021. We thought we were coming out of COVID. We were starting to see some travel restrictions ease, and we wanted to arm people with what they needed to know as they started to venture back out into the world of travel.
Now, we recently just heard from a gentleman who talked about some of his own travel experiences, particularly with some damage done to his wheelchair. Heather, you and I are going to talk in a moment about the Air Carrier Access Amendments Act, but first I want to take a step back and get a sense. What is the scope of the problem that the bill that we're going to be discussing will deal with?
Heather Ansley:
So, that's a great question, Jeremy. The issues of air travel for people with disabilities is unfortunately something that I hear about on a daily basis. Many people who use wheelchairs or scooters who fly, they're going to encounter some kind of issue, whether it's their wheelchair being mishandled, which means it's been delayed, lost, or damaged, or they're injured in the process of being transferred from their wheelchair onto the aisle chair, aisle chair onto the airplane.
And it seems like, from what we hear, if you are a wheelchair user and you're flying, you're probably going to have an issue. Maybe not every single time, but unfortunately, way too many times. And in terms of the broader disability community, unfortunately, this isn't limited to people who use wheelchairs. People who use service animals, people who are deaf or blind, people with cognitive impairments many times encounter some type of issue in accessing air travel because the system just really isn't designed to accommodate the needs of passengers with disabilities, and particularly those, I think, with mobility impairments are where we see so many safety issues and egregious issues that do come up.
Jeremy Holden:
We're here talking about the Air Carrier Access Amendments Act. Tell us a little bit, Heather, about that bill, what it does and where maybe it is in the sort of legislative sausage making process.
Heather Ansley:
So that legislation really takes a broad look at where we are in this problem and how do we get to the root. We've focused in the past on training and other aspects that are needed for the everyday changes. The right now changes, but we believe that there has to be a future in which air travel is designed to meet the needs of passengers with disabilities, just like other forms of transportation that are under the Americans with Disabilities Act have made significant strides so that if you go to a city and you're using a city bus, that city bus, you can get on that bus using your wheelchair, assuming the lift is in service and the driver knows how to use it, but the system is designed for you.
Air travel, of course, that's not the case. So this legislation would say we need some kind of design standards to be developed that recognize the unique needs of travelers with disabilities. So we need for the access board working with Department of Transportation to create standards about what does it look like if we need wheelchair stowage? How can that be done safely? How do we have a path of travel to get on the airplane, whether it's someday to be able to fly in your wheelchair, or it's just getting to a passenger seat and making the transfer without having to get on that aisle chair.
Making sure that lavatories have accessibility, communications. Really looking at how the system is designed to say, "We can't train our way out of this. We can't have policies out of this. We simply have got to have an environment that is different." So that's a really important part of the bill. Another really important part is the enforcement. So right now with this particular issue, if you encounter some problem in your air travel, you can make a complaint to the airline, and if you need your wheelchair fixed or you're hoping for any type of compensation, that's what you have to do. You have to file a complaint with the airline. You can also file a complaint with the Department of Transportation and they will review the complaint. They are required to review all disability complaints. They will work with the airline and they will come up with a determination about whether or not the Air Carrier Access Act was violated.
Unfortunately, even when they find that many times it's been violated, all you get is a letter saying, "Yes, you're right. They violated your rights and we are going to send them a copy of this letter and hope they don't do it again." And we feel like there needs to be ... You can only have so many carrots. Sometimes you have to have a stick as well to get compliance.
Jeremy Holden:
Sure.
Heather Ansley:
So this bill would say, number one, instead of just that administrative process, there should also be the ability to go to court. You should be able to say, just like you can under the Americans with Disabilities Act, you should be able to go to court and file suits under the Air Carrier Access Act. Right now, there is no private right of action. If you go to court, you filed a lawsuit and said, "You violated my Air Carrier Access Act rights," and that's the law you're filing under, you're probably going to get thrown out of court. Whereas under the ADA, at least if it was a public accommodation like a hotel, restaurant, Greyhound, you'd be able to get at least injunctive relief to get them to stop discriminating.
So that's one thing is to say we need to have the courthouse doors be open for air travel just like they are for other modes of transportation. We also, in the legislation, we think that the Department of Transportation could do more in their efforts to enforce this law. So one of the requirements is that they would have civil penalties when they have violations, that they would then make referrals to Department of Justice to be able to allow Department of Justice to take action on cases that are particularly egregious, and then to pursue remedies that might be available, which we've seen just very recently, Department of Justice has done for other forms of transportation that are subject to the Americans with Disabilities Act.
So we're really looking for some parity in how the system is designed. Understanding that transportation as a whole is still a huge problem for people with disabilities, particularly people with mobility impairments, but air travel is even further behind, unfortunately, where we are in the ADA space.
Jeremy Holden:
Where is the bill currently in Congress and is there hope? I know the conventional wisdom, is that during an election year, less gets done because August comes in, everybody's back in district and everybody on the House side is running for reelection. We all know how that works, but is there hope that this is going to have some movement? Where do things stand on the legislative front?
Heather Ansley:
So there are a couple of things happening right now. One is that, unfortunately, our sponsor in the House is going to be retiring. So Representative Jim Langevin has decided not to run again. He's been our champion on this issue. There has been some effort to try to get the House Transportation Committee to go ahead and do some kind of markup. Basically take a look at the legislation and see if they can move it through the committee process. That hasn't been as fruitful as we had hoped, but we still feel like there could be a possibility that we may see some action there.
The other place where we are hopeful we will see action on disability is the reauthorization of the Federal Aviation Administration or the FAA reauthorization. That needs to be reauthorized in October of 2023. And they have to do something, because if they don't, the planes will stop flying. So they will either have to reauthorize or they'll have to extend the current authorization, which was passed in 2018.
So we are currently working with the transportation committees in both the House and Senate on what are the priorities for the disability community in that bill, because that bill is really where so much of the aviation legislation is. Consumer issues, disability issues, things about planes that are beyond our scope. And that's the vehicle that we typically use. So, it's really important that we continue to build momentum behind the Air Carrier Access Amendments Act, so as we get into this reauthorization phase, we're able to show that there is support for the things that we want to get done and that we need Congress to really step up and in this reauthorization make another strong stance for the issues that people with disabilities are facing in air travel.
Jeremy Holden:
So one possible path forward sounds like could be folding the Air Carrier Access Amendments Act into that reauthorization bill so it becomes something of an omnibus?
Heather Ansley:
Yes. The reauthorization, many times, is going to take lots of what we call standalone bills that have been introduced and it's going to put them into one giant package of hundreds of pages of legislation, and this would be a section of that. So that's really where we have been working. But like I said, we've also had this other opportunity that maybe there would be some action on the standalone legislation, at least on the House side.
So right now we're just continuing to push all fronts, and most importantly, let people know, again, the issues that people are facing when they fly and that this is not just an inconvenience. It's not just something that's frustrating. It really is a safety issue when your wheelchair is destroyed or when you are bumped and bruised and dropped in the transfer process. This is not frustration. This is something that must be addressed because passengers with disabilities deserve the ability to fly safely, just like millions of other people every day who take to the air.
Jeremy Holden:
You mentioned the need to show momentum, to show critical mass of people pushing for these types of policies. What can people listening at home do to try and move this forward and get engaged in the fight for the Air Carrier Access Amendments Act and other pieces of legislation that will help enable travel?
Heather Ansley:
It's important to remember that you are a constituent of your member of Congress and then everybody has, if you live in one of the states, you have two senators that are representing you and that they listen to you. You are a voter, a constituent of theirs. And so we're headed into a time when members of Congress are going to be back in their states, back in their districts, and it's important when you're seeing them to let them know access to air travel for people with disabilities is important to you, that you want to see their support for this legislation.
It can mean picking up the phone and making a phone call to their Washington DC office or going online and sending an email to the office, letting them know that as their constituent, somebody who lives in their state or district, that you want to see them support this legislation. And then also, if you're personally impacted, tell your story. Tell what it would mean to you to have this happen. If you're not able to travel right now because you need to be able to fly in your wheelchair, then tell them how important it is that you have access to air travel and that we need to make advancements in this place.
We all know that to have employment, to access healthcare, to access vacations and time with family, access to air travel is really important, and right now there are people with disabilities who simply cannot travel by air because it's so inaccessible.
Jeremy Holden:
And we'll be sure to share some resources in the show notes so folks can reach out to their members of Congress and let them know about the need for the Air Carriers Access Amendments Act. Heather, thank you once again for your time and for joining us here on Connecting ALS.
Heather Ansley:
Of course. Well, thank you so much. We certainly appreciate the opportunity.
Jeremy Holden:
Quick programming note. Connecting ALS will be off next week to let the team enjoy the 4th of July holiday, and we hope all of you also have a nice holiday.
If you liked this episode, share it with a friend, and while you're at it, please rate and review Connecting ALS. It's a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar. Post-Production by Alex Brouwer, production Management by Gabriela Montequin, supervised by David Hoffman.
That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.