Lauryn Cooney
Our next presenter, who is with the American Cancer Society, specifically the Hope Lodge. And that’s Tanya Wagner, and she’s an Operations Support Specialist, so I will give the speak – the microphone over to her.
Tonya Wagner
Thank you for that great introduction, and I really enjoyed the other two presentations. It was great to see how we’re all kind of aligned with similar things, but differently in offering different resources. And what’s great about all the nonprofits is helping cancer patients overall. So a little bit about me. I have been with the American Cancer Society for over 11 years. Before I was a staff person, I was a 15 year volunteer with the organization. I’ve worked in different departments within the American Cancer Society, but in the last five years, I have been with Hope Lodge and like some of you, I have been a caregiver twice myself, and so I’m very passionate about the cause of helping cancer patients overall. And as you mentioned, Lauryn, about the caregiver and being part of that transportation piece, I remember with both of my grandmother, my mom, both how important it was for them to know that I could be there to say, ‘I got you.’ There’s just so much those doctors are throwing at them, the caregivers are taking the bulk of that. So I think, with all the nonprofits including these caregivers, is really important. So that was great information to receive. What I’m going to do is take you through our website, where a lot of our information about Hope Lodge is. This is our website, cancer.org and I went straight to the Hope Lodge page. There’s a search button up at the top here, if you hopefully can see my little arrow that you can just type in Hope Lodge, and it’ll direct you to this page. I know Alex has got the information for the links and everything. It’s a great resource. I’m going to go down here to Hope Lodge for the American Cancer Society. We’re a community that we offer a home away from home for people facing cancer and their caregivers when cancer treatment’s far away. (Plays a video from the website.) Home is where we rest, where we heal, where we’re meant to be together with the ones we love, to nurture our minds and bodies, to be ready for whatever’s next. So when cancer knocks at the door and getting well means leaving home having a place like Hope Lodge, is life giving. The American Cancer Society’s Hope Lodge communities offer a home away from home to people facing cancer free of charge in more than 30 cities nationwide, patients and caregivers can access treatments and appointments, reduce the financial strain of a cancer diagnosis, and find community support and peace hope. Hope Lodge is a place to rest, to heal, to nurture our minds and bodies and when it’s time to go home, ring the bell. Hope Lodge: the home away from home.
Tonya Wagner
I thought that was a great video to be able to just show a little bit of input, where you could see those are real patients that participated in that video with us, to show their support of how grateful they were to have that one thing taken off their plate right when they were having to travel for their treatment, which I know a lot of the other organizations talked about, that a lot of times, patients are having to do that, to go into bigger treatment areas, to oncology programs and whether it’s trial treatments and things like that. And so it’s a big impact for them to take that financial burden of where are they going to stay when they have to do that? As the video said, we have 31 lodges over the US and Puerto Rico, and we actually just broke ground on number 32. ‘ll show you a little bit of that on the website. So if you ever go to the website and you wanted to share that video with someone, maybe there’s a neighbor or someone that you’ve heard of that’s going through treatment, that’s having to travel, and they’re like, What is Hope Lodge? You can share all this information. That’s why I thought it was really important to kind of just go through the website. So here’s a great quote from one of our guests. Again, the name has been changed. “Hope Lodge is more than just a room, more than just a space for me to stay. It was and it still is relief to my heart and to my soul,” and in one of my positions I had when I first moved into Texas area was being a Hope Lodge manager in the Houston area and having those conversations with those guests and their caregivers. That’s a very true statement. They felt like it was a sense of calm for them. A lot of them would say, when they walk in the door, they immediately felt relaxed and calm, and they knew that what they were going through, that they had a place to stay, but just the environment alone was comforting to them. It’s a place where they get to be social with other – we call them guests in Hope Lodge, we don’t call them patients. We call them guests. They get to be with other guests and with other caregivers, and make friends. We had a couple in Houston that met another couple. One, I want to say, was from Arizona, the other ones were from Hawaii. They were there for a very long time. Both of them, they became very great friends and they did some traveling after the fact and met up together, and so really building that bond and giving them other things to do also. So community is a big piece of what we do at Hope Lodge. There’s different events. We have volunteer groups that come in and help serve food or do activities and things like that. And so it gives them that community atmosphere to where they don’t always want to think about cancer, they know they have cancer, they’re fighting for their lives, and it’s nice for them to be able to have that break of that moment, to sit and have a meal with someone, to talk about something else. Or maybe they do talk about their cancer journey, because they’re looking for insight of what someone else may have found through a trial or something like that. But maybe they just want to share a picture of their grandchild or their daughter back home, or their dog back home. And it’s really great when you’re in these Hope Lodges and you walk through, – because everyone always goes to the community kitchen, right? And you walk through and people are having a cup of coffee, and just watching that interaction is the most symbolic, heartfelt thing I’ve ever experienced, and all of my time of volunteering in a nonprofit with cancer patients and working for a nonprofit, of just hearing and seeing that engagement is pretty amazing. When you go down here on the webpage a little bit, you can kind of see some statistics. So we talked about the 31 existing lodges, over 1100 private guest rooms. And since 1970 this organization has given 6 million in nights-free of lodging. So that’s money that patients did not have to worry about spending of where they were going to stay. Lodging costs saved per year for people with cancer, $61 million, and people cured, people with cancer and their families we welcome per year is 31,000, so those are pretty great numbers to see the impact that we’re making. And as you come down, these are the 31 communities. I won’t click on those, but you can click on those, and it’ll give you specific images of those locations and different things like that. So maybe I know a couple of you had mentioned MD Anderson, and again, I live right outside of Houston in Sugar Land, so I’m very familiar with MD Anderson, and so they are a big referring partner to the Hope Lodge in Houston. So if someone knows, let’s say they’re in Maine, somewhere where they live, and their oncologist is sending them to MD Anderson, and they need a place to stay, they can always come to this website, click Houston, and whoever they’re working with at MD Anderson, they usually it’s their social worker or someone in the health system there, and the oncologist office, that’s who the referral comes from. So guests can’t refer themselves. It has to be a referral that they work with their health system partner of where they’re getting the treatment. We’ll talk a little bit more about that. But it’s great that there’s all these different locations that are available in the different areas, and then ACS Empower is a brand new program. I’m going to go back to that, because that is something we’ve put into play the last couple of months. It’s very exciting. We’ve got great response from people all over and all types of communities that have been part of that. We’ll go back to that. Let’s talk a little bit about the expansion of where are those new locations? What’s happening? What is our vision for other locations? We’re always wanting to put our Hope Lodges in other areas that are the most beneficial of where people are going for those treatments that are having to go outside of their area. And then there’s a capital campaign. So the San Antonio that I was talking about, one of the newer lodges that just broke ground is in San Antonio. So let’s say you’re at dinner with a friend, and they mentioned one of their friends who just got diagnosed and having to travel. And they they’re like, ‘what am I going to do? Where am I going to stay? I don’t have money to pay.’ Yes, a lot of times if patients are having to travel for treatment, a lot of them are long term. I think our longest guest in Houston one time was a little over two years that they were in treatment. And so a lot of times it could be six months, six weeks, but there are a lot of long term stays. And so they can always go to the website anytime they want. You can see in the bottom right, there’s that live chat that they can chat to get more information about Hope Lodge. But we also have a 1-800 number that’s available 24/7 and you can always talk to a person. I always try to make sure people know that, because I think so many times they don’t. You can talk to a person. We have staff available, 24/7 on that 1-800 number. The easiest way I tell people to remember it, because that’s the way I always remembered it is 1-800-ACS, 2345, it’s very easy to remember it that way, but 227-2345 is the actual number. Another thing about our Hope Lodges that a lot of people don’t know is that we are staffed 24/7 by American Cancer Society Hope Lodge staff members. So you always have a staff member there. If it’s two o’clock in the morning or two o’clock in the afternoon on a Saturday or Sunday, we are always going to have someone on site. And then if you want to just do a contact, you can fill out your information and submit that there. (On the website) So I’m going to go to Houston. So when you click here, you can see photos, right? These photos always tell people on our websites are real photos. They’re not doctored photos, because it is free housing that we do, we don’t charge anything for patients and their caregivers to stay there. Patients are required to have a caregiver with them while they are there. We do again, that form comes from the referring partner of where you’re getting the treatment from. They would send that over, and it’s all based upon availability. Sometimes they might send a referral over. That might be a six month referral, but we may only have availability, let’s say, for the first three months, and so we might be able to get you in for those three months, and then if additional dates open up, we let you know. So we really try to do the best we can with serving that guest the entire time of their stay. But a lot of times, we will get phone calls or a 1-800 number or through individual lodges, and they’ll look us up online. They’re like, there’s no way, there’s no way that you’re not charging for this. Is this a true picture? Because in their mind or like, if it’s free, what kind of environment am I going to be in? And so we really pride ourselves on giving that safe – we know about compromised immune systems as the American Cancer Society, so we’re going to make sure it’s clean, it’s safe, and what they have is what they need. So if I go through these photos, there’s a photo of the guest room in Houston. You can see every lodge is set up differently depending on the building setup, but this one has the guest, like a living room area on one side and a bedroom on the other. At the lodges, we do supply all laundry facilities. There is no charge. We supply laundry detergent, everything they need for laundry. They will be washing their own sheets and bedding and clothing. Housekeeping helps us get rooms ready when someone checks out to check in, but housekeeping does not come into the rooms. Why the patients and why the guests are there is because of compromised immune systems. So if they need extra sheets and towels and things like that, we provide that again, free of charge.
Tonya Wagner
This is one of the kitchens. So it is a community kitchen. There are no kitchens in the room for Houston and most of our lodges do not have kitchens in the rooms. They’re all in a community space, because we want people, when they feel comfortable enough to come down, to be able to come down and enjoy a meal together, sit with someone, or if they just need to sit by themselves, they’re instilling that community environment. As you can see here, we’ve got refrigerators and freezers. We supply all the cookware, utensils, all of that. They supply their own food. Again, a lot of our lodges have some amazing volunteer groups that come in to cook meals, bring things for meals. It’s amazing of what all the different groups that will come in to help. And this is a little bit more about the dining room area. This is a healing garden. A lot of our spaces have different areas outside for seating and stuff. And so you can see on each page it tells a little bit of specifics about that lodge and about what that lodge has. And so I’m going to go back and I’m just going to randomly pick Birmingham. So if I go to Birmingham, and then sometimes there may be a separate video of that specific lodge, but again, you’ve got all the different pictures. And as you can see it’s similar, but different, right? But they all have that very welcoming feel. And we don’t do any financial background information there on our questionnaire, there’s just some basic background information, but none of it is financial related. And so we always like to make sure people know that. And so now I’m going to go down to Empower. So what is Empower? It’s a new program that we offer at the American Cancer Society Hope Lodge locations. This program is a free education and support for people with cancer, offering sessions to help foster holistic well being, community connection, navigation and emotional support. Empower is for the guests that are at the lodges, but even more, it’s for people in those communities that may not need to stay at that Hope Lodge, but maybe they’re looking for other programs and services to help them through their cancer journey, because they live in those areas. I’m going to go back one thing. So one thing about Hope Lodge is part of the requirement is living 40 plus miles to receive from treatment, and that’s all on that referral process. So back to Empower. So as you can see here, Empower – we have our little engage, move, play, optimize, awaken and enrich. And so different things that we’re doing at these lodges, these are different groups, whether it be support groups that are coming in and spending time with with guests that are there, or other patients that are coming from outside, different activities are ongoing. Maybe it’s yoga, maybe it’s bike rides of some sort. We’re doing games, entertainment, talking about symptom management seminars. We’re talking about prevention, and then we’re talking about survivorship planning. Giving some resources for that. And “waken” is our meditation, art and music, journaling, again, giving them an experience to maybe – they are going through this and they’re in that area, but they just want to get out of the house, and they just want a place to go to just be part of a bigger piece of the community and gain some resources that they’re looking for. Enrich is about food, is medicine programs, massage therapy, holistic education, acupuncture and then resources, financial navigation, support, medical rights seminars, patient navigation, speaker series. So it’s a great program to go into. It talks here again, about all the activities that are there in their area and how to contact your local Hope Lodge. And so if someone you know, and then here there’s some additional resources that are here. And if somebody wants to volunteer at a Hope Lodge, they can go and click here to be able to get connected with volunteering. So I thought that the website was really great to be able to give you guys that personal piece of “what is Hope Lodge?” – what do we do, and how can we be there for support? So that’s kind of a good all around of what we are at Hope Lodge. I’m excited that I was given the opportunity. So thank you, Alex, for reaching out to me to be able to share what we do, and I’m hoping that you guys can share this with people, whether it’s in your family, in your network of your friends and family, just overall, in your communities, because there really are some great services that we provide at Hope Lodge to be able to help all of the guests and caregivers that are out there.
Lauryn Cooney
I appreciate your presentation Tonya. I was writing down a few questions that I had, but you answered them all so you did such a good job at least answering my questions. We did have a comment that the Hope Lodge is such a welcoming environment from another patient. The Empower program is wonderful. And if you’re in treatment at that facility, and they have a Hope Lodge, you can get —
Tonya Wagner
— Even if you’re not staying at the lodge, and let’s say you live in that area, let’s say you’re in Atlanta, right? But you are going through treatment. You’re a cancer patient going through treatment in Atlanta because you live there, but you’re not staying at the Hope Lodge because you don’t live far enough away, but you want to be more involved with some of these other resources. Absolutely, it’s bringing in people, patients that are going through cancer, and their families, bringing them into the lodge and be able to offer some other resources for them in addition. It’s really been great, and it’s been very well received. A lot of great things, we just had our big kick off, like two and a half weeks ago at all the lodges, they had their big open house with it, and the communities loved it, and really got a lot of positive response of them being able to get just some additional resources that they were looking for. And just again, that community feel right of of navigating with each other, of what they were going through.
Lauryn Cooney
That’s so great, and I’m excited to see where that goes. Since you guys just launched it. Let me check if we have any other questions. I don’t think we do. Thank you for presenting Tonya. That was so helpful, and that’s really going to be helpful for a lot of our community members I know.
Tonya Wagner
Well, good. Well, thank you for letting me and I’m gonna have to log off here in a few minutes, but if questions come up later, I told Alex to let me know. Send those over to me. But again, that 1-800 number is a great place to start, a one stop shop to go and say, ‘Hey, I’ve got it. I want to find out more about Hope Lodge.’ And they will get you in the right direction.