Transcript:
This podcast was transcribed through a third-party application. Please disregard any misrepresentations.
Brad Caruso:
Welcome to Civic Warriors, brought to you by Withum. On this podcast, we bring the conversation to you, sharing, engaging stories that motivate and build consensus in the nonprofit community. This podcast is about the innovators, the leaders on the frontline of adversity, guiding lights in the nonprofit industry affecting change. And through their stories, we can all join forces to become civic warriors. Hey, warriors. Welcome to today’s episode of Civic Warriors, brought to you by Withum. I’m your host, Brad Caruso, leader of Withum’s not-for-Profit practice. Today we’re gonna further explore the great work of the Leukemia and Lymphoma Society. Joining us today is Stacy Kreizman. Stacy is the Senior Manager of Patient and Community Outreach at the Leukemia and Lymphoma Society’s New Jersey and Northeastern Pennsylvania region. As a patient and community outreach manager, Stacy works directly with blood cancer patients and their caregivers to identify educational information about their disease or treatment, emotional support and financial assistance.
Brad Caruso:
Through their journey, she plans patient facing education programs on survivorship topics that help patients not only survive, but thrive throughout their treatment and beyond. Stacy also engages with healthcare professionals and community outreach to raise awareness about LLS’s support services and how patients can connect them. So clearly doing great work to help the organization and help those that need it most. Uh, who are the patients and the individuals that LLS supports? Uh, she’s worked at LLS for, uh, six and a half years. Loves the impact she has on patients, uh, who take advantage of LLS support and does a lot of great work, uh, helping, helping those. So, welcome to the show, Stacy. Very happy to have you here.
Stacy Kreizman:
Thank you so much for having me.
Brad Caruso:
Great. So I, I’d love to start off, maybe we can, uh, talk a little bit about how you arrived at LLS and, and why it’s special to you.
Stacy Kreizman:
Yeah, absolutely. So I arrived at LLS after a previous career working with children and families in hospitals as a child life specialist by trade. Uh, but I realized along the way that I wanted to change my focus from working in a clinical setting to working in the nonprofit space. Um, so I moved over, uh, to working at Make-A-Wish in New Jersey, and then now at LLS, uh, where I still get to focus on working with children and adults who are facing life threatening medical conditions. Um, LLS is special to me because I have the support and flexibility to impact patients throughout our region, um, in so many different ways, whether it be, uh, patients who are newly diagnosed, uh, all the way through treatment into survivorship and beyond.
Brad Caruso:
Great. Yeah, and, and, you know, my, my experience working with, with LLS and, and like I said, we, we, uh, met with, uh, Amanda on our last episode to talk further about some of the work you do and, and, and the impact that you have. And I think one of the things that, that often, um, you know, gets, gets lost a little bit is, is how many people are affected by it. I think most of us, unless you’re personally affected by it, you don’t necessarily know. Um, you know, the effect cancer has, you know, you hear about it, it’s sad to everybody, but, but certainly, um, when we think about the work that you do, uh, and the passion you have for your work, uh, and how important it is, you know, how, how many people are affected, uh, by Leukemia, lymphoma, and, and the, uh, for the services that you provide, how many people are affected by it? Uh, you know, here in New Jersey, you know, where I live and, and where you live and, and then, you know, kind of nationally, what are, what are some of those numbers look like?
Stacy Kreizman:
Yeah. So nationally, um, in estimated, uh, 1.5 million people, over 1.5 million people in the United States are currently living with or in remission from a blood cancer. So that could be leukemia, lymphoma, myeloma, Hodgkins disease, um, more rare types of blood cancers known as myelodysplastic syndromes or MPN myeloproliferative, uh, neoplasms. But here in New Jersey, um, almost 5,600 people are diagnosed with a blood cancer in any given year. And along with that, which is why the work that we are doing is so important is that almost, uh, 1500 people will die of a blood cancer per year in New Jersey.
Brad Caruso:
Yeah. So, so some pretty alarming statistics thinking that 5,600 people, which doesn’t sound like a lot, but is a lot because, you know, and that’s just New Jersey alone, and then over one and a half million people, uh, you know, living, living with or, or have experienced having leukemia or lymphoma or, or one of the, the various diseases, uh, blood, blood diseases. It, it’s incredible the work that you do to support that, right? That, that’s having a a case management over 5,600 people is challenging. Not every organization supports this exact cancer, but, um, so certainly the importance of your work is highlighted by that, by the, the sheer volume of cases that come across. And just the, the amount of, of time and effort I imagine you have to spend with each individual patient or with, with, uh, educating those around. Um, you know, certainly there is a lot of, a lot of effort to do, to provide, do care to, to, uh, help people in the right way.
Brad Caruso:
Um, you know, everybody going through this, you know, they’re, they’re one instance of that. And, and you don’t wanna give them a bad experience. You wanna help them along the way. Um, you know, one of our most recent, uh, podcast guest guests, as I mentioned, Amanda, um, who is a cancer survivor, you know, shared how important LLS was in her cancer journey. She talked a lot about, um, the peer-to-peer support and why that was super important. Um, she talked a lot about how LLS came into her life and helped both financially, uh, with assistance because the, the medical bills that, that go along with cancer treatments and with the hospital stays and everything that goes along with it are, are, uh, high <laugh> to say the least. Not to mention the fact that you’re out of work, you’re not able to fac, uh, you know, operate in a normal life because of the draining effect that a disease can have on you. Um, can you talk a little bit about, um, the journey with LLS, right? I think that’s a big part of, of, uh, your, your role at LLS and how you help and, and, and kind of some specific examples of how, how you help, like what does that journey look like, uh, from your perspective?
Stacy Kreizman:
Yeah, so, um, so going back to you speaking about, um, how many people are, are diagnosed or living with and in remission from, so, you know, 1.5 million people, uh, whereas those numbers years and years ago were so much lower, and now people with advances in treatment and, you know, uh, targeted therapies and immunotherapies, um, are really living longer. They’re, they’re not only surviving, but they’re thriving with their cancer. And so, um, LLS wants to support them throughout their journey, um, not just when they’re newly diagnosed, but all the way through treatment into survivorship and remission and beyond. Um, and I always say that LLS is great about meeting patients where they’re at, and Amanda spoke to all of that when she spoke about her experience and benefiting from a lot of these programs and services that we have to offer. But it things like, if a patient is newly diagnosed, LLS has free informative resources to help patients learn about their diagnosis, their treatment protocol, everything that’s associated with, what does this mean for me as a patient?
Stacy Kreizman:
There’s a whole section of the lls.org website that’s dedicated to newly diagnosed patients who want to learn more, um, anything from the one-on-one, very personalized support that our information specialists can offer. Um, our information specialists are all master’s level trained. They are former oncology nurses, social workers, health educators, who are then specially trained in the blood cancers and can help patients and their caregivers one-on-one, uh, with whatever information they need at the time. We have downloadable questionnaires that help people find a specialist, uh, find a second opinion questions to ask their physician about their treatment, about their prognosis, and what does this mean, uh, for me as, as a newly diagnosed patient. And then as patients and caregivers move through their journey, LLS has all of these amazing emotional support services, again, many of which Amanda had spoken about, like our Patty Robinson Kaufman Peer Support program.
Stacy Kreizman:
That’s first, the first connection program is what we call that. But this is a program where we can match patients either newly diagnosed or anywhere throughout their journey with other patients and caregivers who have been there, who have walked in their shoes and have now said, okay, I have experienced this and I want to help others like myself. And so they’ve stepped forward to go through a national training process to become a first connection volunteer, and they call other patients and caregivers and speak about their experiences, offer hope and inspiration, some best practices along the way of what has helped them, um, and all of those things. And it’s really a way to empower those patients who have now been through, um, their treatment and, and then to empower the newly diagnosed patients or patients who are currently going through it to, to be the best advocates that they can be for themselves.
Stacy Kreizman:
LLS also has online chats or, you know, local support groups, um, and an online support community called LLS community where patients and caregivers can connect with others like themselves based on, uh, their diagnosis, their treatment protocol, their lifestyle, um, whatever is most meaningful to them and what they need at the time. Um, of course, as Amanda mentioned, we can’t forget the financial assistance that LLS has to offer, uh, from copay assistance that help patients with their, uh, with their treatment, with their insurance costs, uh, travel assistance that helps with, uh, ground transportation or lodging or parking at the hospitals, uh, even minor car repairs so that we can make sure that patients have, um, reliable transportation to get them to and from treatment, um, and other local financial assistance programs that help offset the medical expenses that are continuing to build along the way.
Stacy Kreizman:
Um, LLS offers several of these programs that patients can apply for. Um, and then finally, as patients head into remission and survivorship, LLS wants to support them during these phases as well. We’ve created survivorship workbooks in English and Spanish. Uh, all of our resources are available in Spanish. I should also mention, um, but the survivorship workbooks are, um, formatted specifically for children and adolescents, young adults and adults that walk them through how to navigate life after treatment. Um, we’re, we’re wonderful about giving patients and caregivers the opportunity to give back to what they have received from LLS and to help our mission in so many other ways, whether it be volunteering for our first connection peer support program, or participating in any of our fundraising campaigns, whether they’re coming out to form a team with their own friends and family and celebrate their journey during the light the night walks, or they’re feeling better and they want to sign up for a marathon or a hike, uh, through the team and training program. Um, you know, or becoming advocates, patient advocates to, uh, to help lobby and to help, uh, talk with local and national legislators about the challenges that cancer patients face on a, on a daily basis. So any, any number of those areas, we, we want patients to become involved and engaged. And part of our LLS family,
Brad Caruso:
It’s a full service organization from that perspective, because not only are you working one-on-one or many cases connecting, uh, patients with other patients with individuals in remission, everybody’s, you know, sharing that information, which sounds, is just highly beneficial. But also, you know, you’re providing that financial support, which is another element of it. You’re providing resources for education so that people can understand a little bit further, or family members can understand further what their loved one is going through or what the individual is going through. You know, LLS is doing research on top of that, or funding research on top of that to help stop it for preventative research, if you will, or to help stop it. You’re then lobbying on the, on the political side, trying to make sure that our laws and regulations are fair or that you’re able to provide the best care you can provide. And, and so, like, you know, to me that’s, that’s kind of like a very holistic way to approach it. It’s not just, it’s not just, Hey, we have a hotline and that’s what we do. It, it’s, it’s, we are doing everything in our power to end this <laugh>. We’re doing everything in our power to prevent this from happening, but also when you’re going through it, we want to be there with you every step of the way.
Stacy Kreizman:
Absolutely. Um, and on the research side, you know, I think that a lot of people are not aware that LLS has invested more than 1.4 billion in research to support blood cancers, um, or to, you know, to find a cure for blood cancers, I should say. And, and we’re, we’re funding research. We’re supporting, uh, up and coming researchers and very established researchers at over, um, 250 institutions across the globe, um, who are all working in their own ways to find cures for blood cancers that are not only helping the blood cancers that we are supporting patients with at this moment, but those, that research is also trickling down to help other patients as well, other patients with other types of cancers, um, or other patients with other types of diseases in general that, um, that this research is helping. And so it’s really not just germane to the work that we’re doing here with our blood cancer patients, but it’s the bigger picture of how we’re helping so many other patients as well.
Stacy Kreizman:
And so that’s, you know, something that we want the world to know about, you know, the community. And, and that’s a big part of what I do as well, is to help raise awareness about who we are and what we do among healthcare professionals, among community members who, um, who may not know about who we are and what we do until they need to. Right. You don’t necessarily know about these support organizations until you’re faced with a diagnosis or a loved one is faced with a diagnosis, but there’s so much wonderful work that we’re doing throughout those three pillars of our mission. Like you said, the research, the advocacy and support and the patient education and support as well.
Brad Caruso:
Yeah, no doubt. And I, I imagine through, through your work, um, there’s a lot of partnerships you have to develop to, to facilitate that. Um, you know, working with, do, do you do, does your organization work with hospitals? Like do you have, do you have relationships with hospitals? And what does that, how does that, does that help a patient kind of have an, um, involvement, obviously, you know, that they can share, I imagine sharing the resources is the hardest part of how do you connect with the person first,
Stacy Kreizman:
Yeah, absolutely.
Brad Caruso:
How do you go about that?
Stacy Kreizman:
Yes, it’s, um, we could not do this in a vacuum. Uh, certainly we’re, um, we’re a little bit of the middleman here at LLS, and so, you know, uh, but that’s a big part of what I do in connecting with healthcare professionals is going out and speaking with, uh, social workers and nurse navigators and case managers and nurses and physicians who are all on the front lines treating and supporting blood cancer patients on a daily basis. Um, educating them about the services and support that LLS has to provide, uh, for their patients directly. But in addition, we want to support those healthcare professionals as well. And so, um, LLS is, like I mentioned, helping to fund research that’s going on at these individual hospitals, providing grants to some of their physicians who are, um, who have applied for LLS funding to help their research along.
Stacy Kreizman:
Um, but we also have, um, continuing education webinars that nurses and social workers can attend free of charge that are living on our website, that they can take on their own time to learn a little bit more about their role in caring for blood cancer patients or emerging therapies, upcoming treatments, um, and other support services, things of that nature. And, and I go into hospitals and, and cancer centers, um, and do in-services or, uh, if I’m not able to because of COVID restrictions or whatnot, we hold those in-services over Zoom, um, to provide this information so that they know how they can get their patients connected with LLS and our services and programs, um, because we never want to hear from a patient after they’ve been treated. I wish I knew about LLS, right? That’s, that’s one of, uh, the things that really, um, hurts me <laugh>. I take it very personally to say, um, you know, to hear a patient say, I wish I knew that these services and support were available, I really could have benefited from them. We want patients to know as soon after they’re diagnosed that LLS is here to support them throughout their journey, uh, in whatever way we are able to for them.
Brad Caruso:
Um, maybe if you can share, um, any, any, I dunno if you have any specific examples that maybe you’d like to share or have any, any individuals with as much or little information as you wanna share of how, how, you know, either yourself have personally helped or, or the organization LLS as a whole has personally helped, um, kind of through that LLS journey that, uh, that we’ve just talked a little bit about and provided some brief information about. But, you know, maybe any, any specific examples of, of kind of that, that, that journey that you’ve helped someone through. Um, any, anything that you feel, feel, to share would be great.
Stacy Kreizman:
Oh dear. There’s so many, uh, so many for so many different reasons. Um, you know, patients that I speak to on a daily basis all have so many individual experiences that, like I said, are, are so individual to that one patient. And I, so I think of, uh, one of our caregivers who has helped his wife through her diagnosis with acute myeloid leukemia. And this is a gentleman who, uh, was one of those caregivers who after his wife was treated, said, I wish I knew about LLS, did not find out about LLS in our services until after she had completed treatment. She’s doing very well. Um, but somewhere along the way, this caregiver found out about our first connection peer support program and, and signed up and said, okay, I’ve just been through this with my wife. I want to help others so that they know how to navigate this process.
Stacy Kreizman:
Um, because he felt that he needed to navigate this process all on his own, he sort of was self-taught on the job training kind of thing in helping his wife navigate, um, her diagnosis, her stem cell transplant, her treatment, communicating with the healthcare team, um, administering medications, and just the general care that goes along with helping somebody through that journey. And then, so he signed up to become a peer support volunteer, a first connection volunteer, and now has amazing things to say about how much he is not only helping other caregivers to not feel the pain and the stress and the challenges that he felt when he was there, but it’s also therapeutically helping him process what he’s been through in, in, in what he went in helping his wife. Um, his wife is doing wonderfully, uh, he is now doing wonderfully. He feels like he’s a very big support to other patients and other caregivers now through this program. Um, and I think it just really speaks to the, the full circle part of the support that we have to provide. Um, you know, this gentleman did not, you know, went from not knowing about LLS and supporting his wife through her journey and is now helping others like himself and, you know, paying it forward, so to speak.
Brad Caruso:
Yeah. And I, I imagine that’s, uh, that’s probably a, a fairly common occurrence that you work with where, you know, someone goes through this and then says, I never knew this existed. Now I know it’s existed. I want to help, I want to, I want to give back to this because I realize how important it was in my journey. I think you might have mentioned this before, but is there, is there a network or is there a, a kind of advocacy group or team, if you will, a let, let’s say that you go through all of this and say, I want to, I wanna volunteer, I wanna give back. Uh, what, what does that look like for an individual that, that wants to get involved in that? Is there, is there like a network of individuals that do that on, on a volunteer basis?
Stacy Kreizman:
Absolutely. In so many different ways. So our, our advocacy, uh, side of the house, so to speak, our, our Office of Public Policy and advocacy initiatives are always looking to, uh, build their network of volunteers, um, that are, uh, hundreds of, of thousands of, of patients and caregivers and, and other generally interested individuals, healthcare professionals who, um, want to help those causes from a, from a legislation side. But in addition to that, so many other opportunities as well, whether it be volunteering at one of our fundraising events or like the night walks, our team and training events are, you know, running for our visionaries of the year campaign and helping to raise, uh, critical funds to, to continue research efforts, um, and find cures. Um, and then patients and caregivers who want to volunteer on the mission side and, and help reach out to other patients and caregivers and inform them about the services and programs that they can continue to benefit from throughout their journey. We don’t ever want LLS to be, um, you know, this umbrella organization that cuts a patient a check and they never hear from us again, right? We want to be in touch with them throughout, we want to provide local touchpoints. We want them to know that there’s a local, um, a local presence of LLS in their region where, wherever that may be, um, and that there’s opportunities for them to continue to engage in with LLS in whatever way they will find meaningful to them.
Brad Caruso:
Yeah, it totally goes down into, into the, the, you’re, you’re providing that, that very close connection and family type relationship that you’re building a bond with every individual that crosses paths with your organization. And it’s probably, it’s a very complex thing, but at the same token, realizing that at the heart of it is we’re trying to help an individual, we’re trying to help a person, we’re trying to help a family through this. And I think everyone can appreciate that. And, and, you know, all your hard work in doing that certainly, uh, is, is probably noticed by so many, and, and I’m sure you’ve developed a lot of relationships through your job that, you know, you get a lot of satisfaction and personal life on <laugh> on helping those around. So yeah, that’s, that’s super cool.
Stacy Kreizman:
Absolutely.
Brad Caruso:
Yeah. And as, so as, as an individual, let’s assume that, um, you know, I, I assume the first kind of, um, thought that that would come through your head as a doctor or a diverse action as a doctor says you’re diagnosed with leukemia or you know, that that occurs. Um, you know, I, if, if there was an individual there, you know, you’ve talked a lot about you wanna make sure that people know who to reach out to, what to do, where to go, and in some cases the Dr. May say, Hey, you should call this number, you should talk with lls. In some cases that may not happen. Um, you know, if you’re an individual going through that and you’re on the front end of that, or you have a family member on the front end of that, um, you know, how do you contact you? How do you get in touch with, with you LLS, with the organization, um, and what, what’s the easiest way to make that happen? What’s the easiest way to kind of start that journey with LLS?
Stacy Kreizman:
Yeah, so there’s, uh, there’s several different ways for an individual to get connected with LLS. One of the easiest ways is to visit us online, on our website at www.lls.org, or reach out to one of our expert information specialists by calling them at 1-800-955-4572. Um, I’ll repeat that for those in the back. <laugh>, it’s 1-800-955-4572. And by calling an information specialist or connecting with an information specialist for that very one-on-one personalized support, it allows a patient to, to start that journey with, with us. Um, they don’t just speak to an information specialist one time and, and then that’s it. The information specialist starts the process of talking with them about whatever it is they need most at that time. But we know very well that a patient, what they need today is very different from what they may need tomorrow or the next day or next month, or six months from now.
Stacy Kreizman:
So we have a system in place where weeks after that initial phone call with an information specialist, a patient or caregiver will receive a follow-up touchpoint by either myself or a trained volunteer so that we can continue that conversation and say, okay, um, I know you’ve talked to an information specialist a few weeks ago now recognizing you’re in a, a different stage of your treatment. How else can we help you? Did you benefit from our financial assistance? Have you heard about our first connection program? Would you benefit from hopping online and, and watching a webinar or listening to one of our podcast episodes, um, or joining a local support group, or, Hey, light, the night walk is coming up, or, um, you know, our big climb event is coming up. Uh, would you like to join us and, and, uh, and help us out in that way? So, so many different ways. In addition, our healthcare professionals are also offered the opportunity to refer a patient through our online referral form. So it’s not something that a patient needs to do themselves. Um, a healthcare professional can start that process for them. And when a healthcare professional fills out that form, it allows an information specialist to proactively reach out to that patient and start the conversations about the support that we can provide.
Brad Caruso:
Perfect. Yeah, so, so plenty of ways to get connected with LLS as a whole. Certainly they try to make it as easy as possible and provide every resource possible to make sure that, you know, that they can help. And, um, as we’ve talked to Amanda last episode on how LLS has come into her life and how the multiple ways from Stacy, how we, we hear about all the various services that they’ve provided, all the help that they provide to patients, you know, you realize how much this organization tries to help as many people as possible. And as we heard in the, uh, on the front end of the, of the episode, you know, over one and a half million people across the country are affected by this, you know, here in our local jurisdiction, over 5,600 people diagnosed every single year. So this is not a small challenge, and, and when you’re going through it, it it’s your whole world.
Brad Caruso:
It’s your whole life. So, you know, certainly greatly appreciate your time, Stacy, and sharing a lot of this information. Um, you know, our, our goal and one of my goals being one of the visionary the year candidates this year is just to raise as much awareness to LLS, to the cause to how you help those individuals, you know, and my part is to help fundraise some dollars, as you mentioned, uh, through some of your programs. You know, my goal is to fundraise some of those dollars to LLS to help support those, uh, those causes, the programs that, that we talked about earlier. And, uh, really looking forward to it. I I was very happy to be introduced to you, to the program and to have the opportunity to raise funds for a, uh, a wonderful organization that, that does so much good for the world. And, uh, super happy to, uh, have you on the podcast today. So, you know, thank you so much, Stacy, for, uh, for being here.
Stacy Kreizman:
Absolutely. And thank you for all the efforts that you will embark on throughout your campaign. You know, all the money that you and the other candidates will raise help to fund that critical research that is helping our patients on a daily basis in addition to these patient support programs. And we couldn’t do it without folks like yourself. And, and good luck. Good luck in your campaign. I can’t wait to hear about all the great things that you’ll do. And thanks for the opportunity to get the word out to everyone who is listening today.
Brad Caruso:
No doubt. And, you know, it does a, a as we’ve talked about on this episode, on multiple others, you know, it takes many, many people and years to solve some of these major issues. It takes a significant amount of funding. It takes everybody working together. It takes the community to be involved. It takes organizations like LLS and nonprofits that really invest their time, effort, resources, dollars into solving issues, preventing issues. And you know, as we, as we talked about, you know, if you’re going through something, you have a family member going through something, check in on the resource LLS has on their website, lls.org, call in the personal hotline that was mentioned, 1-800-955-4572. And, you know, be on the lookout if you’re a listener. I, uh, I’ll be sending some emails out about the campaign and asking if you can help support LLS and I’d, I’d really appreciate your support in that, that campaign as we try to, uh, raise a significant amount of dollars to help those in need. So thank you everybody for your time and, uh, we look forward to seeing you in the next episode. So subscribe and meet us right back here for the next episode of Civic Warriors. I hope everyone has a great day. Bye everybody.
