Speaker 1: 0:30

I'm Cassandra Isidro. I go by Cass and I work for the Amputee Coalition. I'm the CEO and we provide support, education and advocacy for people living with limb loss and limb difference, which is about 5.6 million people across the United States.

Speaker 2: 0:44

Wonderful I would like to get into. I know you became the CEO, I think, in 2023. If you could talk to me a little bit about that and share like a brief history of your background and how you got into this industry.

Speaker 1: 0:59

Sure thing. I have been in the nonprofit space about 30 years this year. It's amazing. I was at 23. I became an executive director with the Red Cross and spent about 10 years with them, had a good time doing disaster services, media fundraising, all the things, and that really sealed my commitment to the nonprofit space. I went back and got my MBA a number of years later, thinking I would be on a board, but I never left executive positions. I've been able to work for the USO, been able to move healthcare reform and education forward, and now I'm happy to serve those living with limb loss and limb difference.

Speaker 2: 1:32

Amazing with limb loss and limb difference, amazing. And I'd like to talk about the resources and the type of visibility that you guys try to give for this demographic. Could you share with us all the resources that you provide and all that good stuff?

Speaker 1: 1:46

Sure thing, happy to lean into it. We are the only national organization that's sitting in this space, so 5.6 million people. There's someone today in a hospital who is going through an amputation and we have a peer support program, so all likely, someone in our peer support program is visiting them, someone who has a similar amputation, someone who's gone through a similar journey and helping them move along. We also have phone calls all day long, text emails, people looking for resources, ways to connect to each other and ways to get answers to help them in their journey. Our vision is that those living with limb loss and limb difference and the people who care about them thrive in the lives in the way they choose, and so we do everything we can to move that forward. We have a national conference, we have education resources, and then we are constantly in the media and sharing information about what the limb loss and limb difference journey is like.

Speaker 2: 2:36

I think that is amazing. I took a little visit on your website and I saw that you guys have so many resources. You also have the option of like the Spanish version, which is, like, so helpful. And then you guys also have like a peer support group too, like where you guys can meet up and talk about it and share your experiences, because I'm sure that sometimes it can feel a bit what is, what is the word for that Isolating.

Speaker 2: 3:00

You feel like you're alone in this or like how do you like you used to have maybe your limb and then now, like, you've had a change and you don't know where to go. So I love that you have this source for people to go in and even for families to to know what it's like and learn how to support and be there for those people who've suffered from these amputations or their differences that they've had. So I think that that is amazing what you guys are doing. And you guys even have the state laws and all that and talking to your congresspeople and like submitting all that. That is just incredible. You guys have like such a variety of like resources and a hub where people can go on. So talk to me about how you're wanting to have this visibility have a positive impact in the future for everybody who is going through this and family members and just maybe who people who aren't going through this, and them having knowledge of how to support, maybe, their peers.

Speaker 1: 3:58

So it's really. I love that you're on the website and you found everything. We know there's a lot on our website, so it's great to hear that was easy to navigate. You could almost be giving my words for me. But everything from the individual journey. So what you're talking about is when someone is wondering is the way that I'm walking today proper, is this sore, that I'm getting normal? For them to be able to connect with someone through a support group, through reaching out to us, to understand that it probably is normal, it's probably part of the journey and you move past it. This too shall pass, kind of thing. And then taking that into the community and into access issues. So you mentioned so everybody can move is our nationwide campaign.

Speaker 1: 4:40

What you don't realize is that oftentimes someone who has an amputation, who has a limb loss, when they lose that we think, oh, insurance will take care of it because we're used to that, and that's not always the case. Some people get one limb for their entire lifetime. That's what insurance will pay for, and so what we're looking at is increasing access for those who to have more limbs to do the things that they want to do. More prosthetic devices If a child grows out of the prosthetic device leg that they have. They can't necessarily get a new one right away If they want to play soccer. That's a different type of prosthetic device and insurance may not cover it.

Speaker 1: 5:15

So we are at the state level, as you mentioned, and looking at moving legislation forward across the country to improve that access and make it fair and equitable for everyone. You also mentioned my space is really the equity space and our Spanish resources. We also have a BIPOC support group, black Indigenous People of Color support group, and really the disparities in amputations across Spanish-speaking populations and across Black Americans is vastly different than the rest of the population, and so we lean in especially to ensure that those communities have resources that meet them where they are and help them to move along their journey in a way that is allowing them to thrive, as I mentioned earlier.

Speaker 2: 5:58

Yeah, no, that is incredible. I love the diversity in that. You guys are here to help literally everybody who needs it and I just I think that's incredible. I'd like to know, as a marketing aspect of this, how are you getting your name out there? I know you've attended like events, conferences. You guys have had maybe other interviews and all that stuff. I'd like to know how you're on your end, like maybe through social media or videos, how you're getting the word out there and sharing what you guys offer.

Speaker 1: 6:26

Sure, every day, where our most activity is. Our favorite channel is Instagram. That's where the community tells their story. We have a we Thrive campaign and so literally community members can come on and make their own video, or we help them or we connect to them, and they share exactly what happened today, and sometimes the triumph for today is getting out of bed. Sometimes it's running their first 5k, sometimes it's getting a running blade, sometimes it's settling in a new wheelchair because they've had a setback or a difference or a choice, but they share whatever that experience is, really normalizing it and connecting with someone else who's going through the same experience.

Speaker 2: 7:04

Yeah.

Speaker 1: 7:04

Our other highlight is limb loss, limb difference awareness month, which we're a little bit out from, but we're already planning for it's April every year, and in January there's a toolkit that will be released so that everyone can help us share that word. And in January there's a toolkit that will be released so that everyone can help us share that word. And in January there's also an advocacy toolkit because we have state proclamations. So we ask each state to proclaim April as Limb Loss, limb Difference Awareness Month and help us spread the energy.

Speaker 2: 7:27

Wow, you guys are like on that. I love that. You have like a month. Do you guys hold events Like is everything online where you could participate in all that? It?

Speaker 1: 7:35

is. It is State resources are shared online. Things that we find out about are shared online, and then there's a toolkit that you can literally take resources, put it on your LinkedIn, put it on your Instagram, spread the word however you individually want to, or however people want to activate their support group, their hospital, their orthotic and prosthetic clinic. All of the resources are there to really activate. In the month Last month, I think, or last year we had a couple areas bridges lit up, orange for Limb Loss, limb Difference Awareness Month, we had community education days in hospitals and we had people sharing more stories than ever in that course of that month.

Speaker 2: 8:12

Love it and I'd like to talk about the peer volunteer aspect of it. How can people apply, and is it only people who've had that experience who can help, or can it be other people, maybe just as support? How does that work?

Speaker 1: 8:28

The peer support program is intended to people that have limb loss and limb difference, so you can apply on our website if you're interested in being a peer support volunteer. And those volunteers go through training. It's a formal certification process and then they make connections through their local hospitals so that they can be able to connect with someone literally when they're in the hospital, when they've just gone through the amputation. Sometimes those are one visit, sometimes it's a relationship that lasts a lifetime.

Speaker 2: 8:54

Wow, and I also saw you have the option to, if they wish to do like via zoom or video. So I think that is incredible, like you guys are really on top of that, talk to me about any of the technologies that have improved the lives of people who are looking for limbs. Like, do you guys, are you guys up to date on, I guess, like the latest advances for that and how that's helped you guys raise awareness?

Speaker 1: 9:20

It is. We have a strong relationship with the orthotic and prosthetic community and that's where we can share new advances with community. Most of the opportunities that we're looking at and that we're sharing that people are really asking for are advances around pain. Normally, when you have an amputation, many people still experience pain from that limb that is no longer there, and so there's a lot of different holistic methods. There are surgeries. There's ways to share solutions with the community around pain.

Speaker 1: 9:47

There's also what we hear always on the news is this new bionic arm, this leg, this microprocessor knee, all those things, and we share those advances with community. But we're really on that side of making sure that when those are available, they're available to people who need them and they're not exclusive to those who can. Some of these things are the price of a car or more, and we really want to advance insurance and coverage so that everyone can access what they need in their life. Not everyone needs a microprocessor knee, but if they want it and it fits their activity level, then we want them to be able to have access to it.

Speaker 2: 10:19

Wow, absolutely, yeah, no, that is amazing, and I'd like to know if you have like right now, with our listeners, anything that maybe you would like for them to know or share or give visibility to. You have the floor for that. Even myself, I'd like to learn new information that perhaps maybe I didn't even know about.

Speaker 1: 10:36

I think the we just went through the Paralympics and we had this great feature that we were able to do with with a reporter who offered us an opportunity, and it was parents asking how do I talk to my kids about limb loss and limb difference?

Speaker 1: 10:51

And I would just encourage people to have an open conversation that many folks look to the limb loss and limb difference community as inspiration, and that's wonderful, that's very complimentary, but they're humans and not there for other people's inspiration, and so ask people their story, say hello. Many of our community members say that the worst thing that happens to them is someone offering to help them in the grocery, and people mean well, but it doesn't come across that way. It makes them feel less than, and so I would just encourage folks to cross bridges where they can, to go on our website to learn more, to help people truly live in community as they want to and not as inspiration for someone else or as tokenized or any different way, and so that way that we can all live together and help people really thrive is is would be my message, cause that's the one we don't get to tell often enough.

Speaker 2: 11:40

Yeah, no, I think that is great. I think that maybe myself, when I was younger maybe like 16, 17, I remember I was at a grocery store and I saw somebody who, in my mind, I thought maybe perhaps needed my help, and I offered and they were just like no, thank you. And I don't know why. But I went to my car and I cried because I felt like you know, and it was from a good intention and I was much younger then but you saying that like wow, like absolutely, it can make people feel like hey, I can do this. Like no, no, thank you.

Speaker 2: 12:10

And I know they didn't mean anything from saying like no, I don't need your help or anything. But I don't know why I felt so touched and I felt like I just I cried because I was like man, I don't know if I offended them or if, like, I did something wrong, I don't know. I just I felt so bad. But I just wanted to share that that that's great for somebody else who maybe thinks that they, they, you know, you're not self-aware of those things, and so knowing the other end of that coin and how people actually feel about this is it's good, it's good to know you, you learn and you grow.

Speaker 1: 12:41

It's something. It's something to process and think about and to pause with right now.

Speaker 2: 12:44

Why not just say a simple hello, and if someone needs help, they'll probably ask yeah you're absolutely right about that, and I would like to know if you guys have any plans for expansion or in any way grow or go to another, I guess, state or like. Where's your main organization in Like? Is it in an office in a building in DC or?

Speaker 1: 13:06

So we're a national, remote organization. So we have 24 staff and many volunteers who do this work covering the entire country, which is not many people, and we're very small nonprofit for all the work that we do. So we are trying to grow as quickly as we can. We will approach year-end giving. We are a donor supported nonprofit so we always ask for support from people individual donations, company donations to help move the work forward, Because the 5.6 million people that number with chronic disease is just growing and so we're looking at how we can expand services as much as possible.

Speaker 2: 13:41

Love that. And now, where do you hope to see yourself in the next five years with the company either with yourself or with the company that you'd like to share with us?

Speaker 1: 13:51

Yeah, I feel very blessed. My passion and my experience lead me towards turnaround organizations and our organization had a tough time during the pandemic both the pandemic and challenges internally and all those things, and that's why I was brought on board, because this is a space I enjoy. So I look forward to five years from now sitting up and saying we did it like with my board, with our volunteers, with our staff, and saying this is the organization we knew we needed to be when we grow up and we're there.

Speaker 1: 14:22

And so that's where my eye is right now and I look forward to still be sitting in the seat and maybe give you an update. Love it, love it.

Speaker 2: 14:29

I'd like to ask about how you, what you guys, went through during COVID like how was that handled?

Speaker 1: 14:39

and all of that. You know, being in the nonprofit space for 30 years. There are so many challenges that organizations are. It takes a lot, it takes a lot of grit to be in this space long term.

Speaker 1: 14:47

Our organization was founded in Tennessee and they had just made the move to be a national organization, to move to DC right before the pandemic and so that, coupled with the pandemic, with most of our service, I mean peer visits, those are in person and it just we tried to do. The organization tried to do the best that it could but didn't, came up short in a lot of areas, had some turnover in staff and really just had to look at the core of what the work and reinvent itself a little bit. So not any one direction, I can tell you. I told my board when I first started. I said you know there are many organizations that did not survive the pandemic, many nonprofits. It takes forward planning. It took a lot of things to be able to do that. So just the fact that we're sitting here able to rebuild is the positive momentum that we need, and never mind how we got here, we're just moving forward.

Speaker 2: 15:40

Yeah, no, I love that and I'm glad that you guys were able to go through that, because I know that was a very hard time for a lot of people and just like, with all the change and oh my goodness, but we're here. We got through it four years ago, I know, right, and I'd like to talk about, um, your team, and what the dynamic is like with you guys. Like, are you guys constantly at events? Are you guys like in the board constantly talking about like hey, I saw this come up. I think we should incorporate this. Talk, talk to me about that. And are you guys very, like, comfortable with giving each other ideas, or is it more, um, I guess, strict, where it's just like no, we got to send it to this person first and then we'll talk about it.

Speaker 1: 16:19

Talk to me about the dynamic. Yeah, um, I have been very fortunate my entire career to have just amazing senior teams, like my senior team. I think everyone in that senior team is more qualified in their space than I could ever be, and that's what I hire, that's what I like to cultivate as a leader. So we have there's the senior team is all those directors and some of the other staff, and that's where we look at the future of the organization. That's where we're doing our planning. That's where we want to set up the recurring things like you're talking about.

Speaker 1: 16:48

There are things that we do on a regular basis, that we're looking to grow, that we want the systems to make sure they operate effectively, that we can answer calls when we need to, that we can support volunteers, that all those things are structured. But there's also that space that's emergent that can we all hop on a call and figure out how to take advantage of X that just got offered to us yesterday, and so this team that we have in place right now really is able to do that. We were just together about a month ago in Colorado Springs. I said I kidnapped, everybody for three days Kidnapped, and we kind of just all got on the same page, both like energy wise and planning wise, and I think, I really think, it's the dream team to move things forward. Like I couldn't be more excited about the folks that we're planning with at the senior level right now and then everybody else's is. They have the same level in their individual teams, with managers and coordinators and specialists, so that they can move things forward in the buckets of the organization.

Speaker 2: 17:41

Love it. And now, when you're not out here giving visibility, providing resources, what do you like to do as a person yourself? Are you always, like, just so busy that you can't find time and you're just talk to me about that? I'd like to know.

Speaker 1: 17:54

I don't sit still well, so that's advantageous for my career. But also I have three kids. I have a 13 year old, a 16 year old and a 19 year old, so a junior and a freshman or sophomore in college, also a husband. So we are a very active family. I'm a soccer mom who's one of those crazy people that travels around the country for soccer games, love it, and I wouldn't change any of that for the world. I had my family later in life and that gives me the spirit and the love that I need to do the things that I enjoy doing every day. So it's a balance. I don't rest much. I don't require much sleep.

Speaker 1: 18:28

That's not a good message for sleeping, but I'm good with seven hours, and if I get six that's fine too if it's an exciting day.

Speaker 2: 18:37

So yeah, if it's an exciting day, I love that. No, but I love your spirit, the positivity that also really helps. It's contagious. So that seven hours is doing great for you. But if you ever get more, you know, yeah, enjoy that. And now talk to me about your website and how you came to finding all of these resources, cause I know you have like some articles. Do you have anybody who you've hired to help keep up with all of that and like just constantly post it, or do you are you? Is it like a team effort where everybody's looking at the latest things, where it's like, hey, we need to put this on the website, this is like something important? Talk to me about how that process is for updating the website and like all the resources and like tabs. I'm sure when you add to that, is there somebody behind the scenes who's doing that, or so, yes, there's actually.

Speaker 1: 19:24

There are resources that come out in the field and so we recognize that these need to be shared. And that's really our communications and programs team and they are vetting them to the best that they can, based on their experience and knowledge, and then getting up there and out as quickly as possible and social media is really such a blessing in that these days. But the ones that we develop there's just a really special group of leadership volunteers called the Scientific and Medical Advisory Committee, because these things don't just exist. Any of the resources you know how to if you're an above-knee amputee. Below-knee amputee, those are completely different journeys. Upper limb is about 20% of the general population of amputees. That's upper limb, so very small. But that Scientific and Medical Advisory committee develops those resources. So last year we released one of the first ever guides on intimacy and sexuality and that was developed by subject matter experts in our scientific and medical advisory committee and that has been a resource for the community that just didn't exist before. So that's the really special places.

Speaker 1: 20:26

There are people who are choosing. Those are volunteers that are leaning in with their time and expertise to create something that they know is needed. And those gaps are informed by ongoing communications with our community. So they say I need more mental health resources or there's a new prosthetic device that's available. We might do something about that. There's osteo integration, which is actually an insertion into the bone rather than a prosthetic device, and so we've created new resources around that to help people understand what that's like around the world, because in the U S it's it's a new market, it's a new opportunity. So always looking at those with the volunteers and staff really leading that way.

Speaker 2: 21:05

Yeah, okay, sounds like you guys are on top of that, so that's amazing Good.

Speaker 1: 21:11

It's not my area of expertise, um, and we've got all the right people leaning into it, which is really special, yeah no, it takes a team to, you know, make it all work.

Speaker 2: 21:18

So that's amazing. Have you guys considered going or maybe you've already done this, but going to like schools too and like giving, like conferences or speeches or like something interactive for the kids to also know, because I'm sure like it's tough for like teens or kids in school with that and they're like growing up and I'm sure it's not an easy thing for them to do, and I think it would be, in my opinion, kind of cool and eye-opening to have you guys go to schools and just talk about it a little bit.

Speaker 1: 21:48

We do have a youth engagement program and we have a youth advisory group.

Speaker 1: 21:51

So these are young people and young adults that are living with limb loss and limb difference and they are some of the most dynamic, huge personalities that are just paving the way for people to understand their journey.

Speaker 1: 22:03

So, whether it's Henry at a basketball game you know telling people how it's different or Divine is a new university student I think she started a new club at her university they are making an example by their life and they're, you know, crossing bridges and helping people understand what it's like and what they need on a daily basis. So we want to reach out to the community members that are youth and young adults to help them move forward in their lives. We don't have the capacity to be out in front of everybody else right now, but we really hope, by developing the voice of the young people and young adults and enabling them to have those channels to be able to do that, that that sets it forward, and then maybe we'll get to a day when we're bigger and we have larger campaigns and can reach out to everyone else. But I think they might get there before we do anyway.

Speaker 2: 22:50

Oh wow, no, that is great that you guys are like working with the youth and like inspiring them and they're going off and branching out and helping. That's like such a positive impact for the community and for just like society in general, and I just think that that's incredible. You're like, you're leaving those positive impacts on them so strongly that they're just like I want to. I want to share this information, I want others to have the help that I did, and I'm sure they'll shout you guys out too, so those people can come and get all the resources and help from you guys as well. So amazing. I would like to know if there's anything that maybe I'm not touching on or haven't mentioned that maybe you would like to share with our audience maybe any upcoming events or workbooks in the work, anything of that nature. Just want to make sure, like, while I have you here, we get everything.

Speaker 1: 23:37

You've hit on almost everything that I think we, as we lean into this next year, we are just looking forward to more of all of it, to more of support, education, advocacy the organization has we've really honed in on that as our foundation. So our support programs, our peer support programs, our support groups, those are foundational to the work that we do. There was a period in time where the organization wasn't sure if they were keeping them, and I just want people to know that they are. They're not going away, they're growing. That's our focus. We have realigned our staff to be able to lean into that more, to look at technology, to look at solutions to grow and I think that's really exciting as well as education and advocacy that we've touched on as well. So we've hit most everything.

Speaker 2: 24:23

Yeah, no, this is just incredible. And is there like maybe somewhere where people can reach out to you guys on your website, or do you have a particular place where it's like no contact us through here that you prefer?

Speaker 1: 24:34

Yeah, so the biggest thing is we are a federal partner with the administration for community living, and so we implement the national limb loss resource center. So the best way to connect for resources, for peer support, for anything that we've talked about here today is the national limb loss resource center, and that's on our website at amputee-coalitionorg Instagram also we are very active on there and for professionals in the orthotic space and the prosthetic space and you know, professionals who are living with limb loss, limb difference can always connect with things on LinkedIn as well. Beautiful.

Speaker 2: 25:05

And if there are maybe like doctors or other people who maybe would like to like sponsor you guys, they can reach out to you guys or help or be a partner with you guys.

Speaker 1: 25:15

They can reach out Certainly. They can reach out Certainly Any clinics across the nation, any hospitals, any providers that want to have our resources, that want to connect with the things that we have to offer. We are always available to partner. We do everything through partnership.

Speaker 2: 25:27

Beautiful. And now for my last question. I like to ask this for everybody is do you have a quote or a saying that maybe has inspired you in your life, even outside of where you are today? Maybe growing up you heard something that really touched you. Could you share that with us?

Speaker 1: 25:45

Oh, wow. I think that the biggest thing is and it's as simple as this too shall pass, and it's not just for the negative spaces, it's knowing that the joyful things that happen in life to be present for that, because they won't last either. So it's like good and bad, and so I do find myself like I'll grit my teeth or I'll smile. I'm like this too shall pass, and it's good and bad, and I think that's just the reality of life. The change is always around the corner.

Speaker 2: 26:16

I agree. Yeah Well, thank you so much for being here and giving us all this insight and information that I was not even aware of, like especially with the types of limbs that they have that are different for soccer. I thought like it was just one and that's how it was. So I hope today that our conversation has inspired somebody to look up more information and look up you guys and just learn. So thank you so much for being here.

Speaker 1: 26:39

Awesome. I appreciate the opportunity. I love it. Thank you, you're welcome.