Transcript:
This podcast was transcribed through a third-party application. Please disregard any misrepresentations.
Intro:
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 non-profit community. This podcast is about the innovators, the leaders on the frontline of adversity, guiding lights in the non-profit industry affecting change. And through their stories, we can all join forces to become civic warriors.
Brad Caruso:
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’s guest is an organization that does so much good for individuals and their families that receive a challenging diagnosis. Alzheimer’s is a disease that affects many individuals and their families. My family included, uh, an estimated 6.2 million Americans, age 65 and older are living with Alzheimer’s dementia in 2021. 72% are age 75 or older. And today we have Donna McGowan, Executive Director of the Alzheimer’s Association, and Stephanie Mansour, senior manager here at Withum in the not-for-profit space, and also a board member of the Alzheimer’s Association. So the organization today serves all of Rhode Island and provides education and support to those facing Alzheimer’s and other dimensions throughout the community, including those living with the disease caregivers, healthcare professionals and families. They’re also committed to advocating for the needs and rights of those facing Alzheimer’s disease and advancing critical research towards methods of treatment, prevention and ultimately a cure. With that being said, Donna and Stephanie, welcome to the show.
Donna McGowan:
Thank you.
Brad Caruso:
So I’ll start with you, Donna. Um, maybe talk to us a little bit about the Alzheimer’s Association and the general overview of the work you do.
Donna McGowan:
So, the Alzheimer’s Association is the number one organization in the world for Alzheimer’s disease, for a chapter offices in every single state. A larger the population, the more chapters. So Rhode Island being tiny but mighty has one chapter, a staff of seven and a plethora of volunteers because we could never do the work that we do just with a staff of seven. And what we do, we have programs and services in the community. Everything we do in the community is basically free. Um, and we have pro education programs for caregivers, for people with the disease, for lay people that just wanna learn about the disease and people that wanna advocate against and find a cure for the disease. So programs are number one on the top priority list, as well as forums in the community, listening to the public, listening to the public’s needs. We have approximately maybe 48 support groups around the state.
Donna McGowan:
Some are in person, some are virtual. So it’s, it, it suits. It’s not one size fits all. And hopefully there is a size that fits you appropriately. And I’m very proud to see that we have a 24/7 helpline. Uh, it’s a hotline for anything. If you’re looking for referrals, if we’re having a crisis at home with your loved one, we have licensed clinicians on the other end of the phone that act just like we do during the day in the office here. And that number is 1 800-272- 3900. Again, it’s a free service. It’s 24/7. If you’re calling from a 401 area code during the day, you are gonna get the Rhode Island op to office. So if you have a New York area code, but you’re working in Rhode Island, hence you’re gonna get the New York office. But I just wanna give the back office number for Rhode Island. It’s 401-421-0008. We’re also very aggressive in the research world, and we have a wonderful public policy division where we advocate on the local, state, and national level just to mention a few of the things that we do.
Brad Caruso:
That’s great. And how did you personally get involved in that? How long have you been there?
Donna McGowan:
Well, that’s very interesting. So I retired about 15 years ago, and I’ve been here 14 <laugh> <laugh>. And I came in just thinking I was, you know, I was doing part-time consulting when I retired, and I thought I was gonna fix some financial issues and reorganize it. And I just fell in love with it. And so it’s become a passion. And I think when you meet my staff and our volunteers, there’s so much passion and fire that we’re doing it out of a labor of love, not outta labor of work. So I can’t even believe that these 14 years have flown by, but they have seriously flown by.
Brad Caruso:
Yeah, it’s great to hear. And I, I’ll say that about my career over here at Withum, I’ve been here, you know, you think you’re going to public accounting for a couple years, and I’ve been here for 17, so I know.
Brad Caruso:
And it is the passion that you work for and you know, it’s, it’s that, that drives you. So it’s great to hear, and I’m sure everybody that you encounter can experience that, which I think is, is, uh, translates well. Talking about Alzheimer’s with dementia. Why is it such a difficult disease to work with and cure?
Donna McGowan:
We have an international research conference every July, um, and it’s world renowned. And I think this year we had approximately 13, 14,000 researchers. Um, most, you know, 7,000, 8,000 were present. And then the others were jumping in virtually present their work, but they’re studying everything. They’re studying the environment, they’re studying genetics. So it’s a complicated disease. Um, and we’ve had some exciting breaking news this year for folks that are in early stages of the disease. If you’re in the early stages, there are now two FDA approved drugs. They infusion drugs. And I’m proud to say after a long battle or very fierce short battle, I should say, with Medicare, Medicare is now paying for these infusions, which is wonderful ’cause they’re exceptionally expensive. But what these infusions do is they break down the plaque in the brain, which disseminates breaks apart. So it gives that person that’s in early stage, a longer period of what if early stage so they have a longer life in the first stages of the disease and a better quality of life. So this is exciting news because we haven’t been able to say anything like this since the disease was discover. Right. So we’re very excited.
Brad Caruso:
That is exciting. Yeah. And, and obviously it’s a breakthrough. Uh, I know with any, uh, disease, any issue, you know, it takes a long time to get something out there that’s funded that helps and doesn’t harm. So I think that’s, that’s great news. Certainly. Can you share a little bit more information about Alzheimer’s itself? Like who specifically does it affect, you know, when does it affect them?
Donna McGowan:
Yeah, absolutely.
Brad Caruso:
Um, I think it’s helpful. Give a little context there.
Donna McGowan:
Absolutely. Um, first of all, it’s random selection. The majority of it is random selection. So it, it can affect anybody. No one escaped from this disease. And I think for us, it makes it easy for us now to lobby on Capitol Hill, to lobby here at our State House in Rhode Island because we’ve done such a great job of awareness and promoting education about the disease itself that people now understand. You know, people walk away and say, oh, that’s not, I don’t have that in my family. That’s never gonna happen. But now we’ve done such a great job of educating the public about this is just purely random selection and the majority, so anybody can succumb to this disease, first of all. So that’s why we get great, great representation and support from both the Republicans, democrats, independents, and we’ve been campaigning red plus blue equals purple, which is the disease.
Donna McGowan:
So we’ve made great strides on all levels in the advocacy world because of that. Um, it can strike anybody. There is a gene, the APL four gene, it, it’s in the minority. Uh, but if you do have that gene, then the likelihood of it being passed down is very great in, in the family generation. But it is in the minority. I must stress that, you know, we think of it striking seniors, right? You know, I think one in three seniors are predicted to get to come down and be stricken with Alzheimer’s disease, but we have a whole population under the age of 65 that is our early stage, early onset group. And that it, it’s just, it takes my breath away every time I meet somebody that is struggling with the disease that is under the age of 65. I mean, as young, I’ve seen as young as 49, 45 years old.
Donna McGowan:
And it’s just, you know, we don’t know why. And, uh, it just, it takes my breath away. That’s all I can say. So are you eating the wrong foods? What do we know about the disease right now? We know that if we live heart healthy, if we eat what’s good for us on Mediterranean diet, if we exercise 30 minutes a day, five days a week, and we stay on that regimen so we don’t have to overexert ourselves, but we’re incorporating at least 30 minutes of exercise into our schedule, you know, if we do, we engage, we socialize. You know, covid was horrible because a lot of us were isolated, right? That was the worst thing for this disease. Um, so we need to be socially engaged. We need to be actively engaged either in work, in community service efforts or hobbies. Um, and we know that that will prolong us and keep us healthier for a longer period of time. Um, I don’t know, Brad, if you want some stats, I can give you Rhode Island specific stats. Um, presently there are 25,000 Rhode Islanders, what we know of that have Alzheimer’s disease. And of those 25,036, uh, there’s, uh, 36,000 home-based unpaid caregivers doing it out of a labor of love. They’re either working, managing a small family, managing an older family, and taking on the responsibility as a priority caregiver. So if you could just imagine that life, what it must be like, because if this disease progresses, it becomes a 24/7 labor of love.
Brad Caruso:
Oh, without question. And I appreciate you sharing those stats and, and also additional information. ’cause anybody that’s been affected by it knows that it’s not just the individual dealing with it, but it’s also the families that, you know, not only is it a a disease that affects the mind, but it’s also, you know, you’re physically helping this person. You’re physically around them. You know, I, I imagine there’s a level of frustration sometimes on, on both sides is, you know, I know my grandfather was going through it. He was frustrated that he couldn’t remember something, that something was going on. And, and, uh, there’s a lot that goes into it. And the caregivers, you know, are are the ones most, you know, significantly affected by it too.
Donna McGowan:
I think also that, um, this disease, there’s no good disease <laugh> it, this disease is presently, I believe number six of the top 10. And along this trajectory with no cure or protocol by 2050, it could be the number one killer in the top 10. But what is unique about this disease that no other disease has is that you’re grieving a loss, that hasn’t physically occurred. So how do you deal with that stress? How do you deal with that stress as the person who migrates and progresses into the disease? It has an additional component that no other disease has.
Brad Caruso:
Correct. Yeah. Appreciate you sharing that. Um, I’ll turn it over to over to you, Stephanie. You’ve been involved obviously with the Alzheimer’s Association. You know, maybe provide a little bit background about how you got involved and why you got involved.
Stephanie Mansour:
Sure, Brad. Thanks. Um, so I was introduced to the Alzheimer’s Association back in 2021 after my grandfather had passed away, um, by fellow board member. And, uh, a good friend of mine, Erica Olobri. So my grandfather was living with dementia for many years, and my grandmother, my mom, my uncle were taking care of him. So it was a, a big stressor on them. So like, uh, Donna had mentioned it’s, it’s not just, you know, the person that’s living with the disease, but also their family that’s, you know, has to take care of them. Um, so it was definitely a lot of work for them. Um, a lot of stress as well. So, my grandfather ended up passing away in 2020 just one day before my son Callaway’s first birthday. So that was, uh, definitely a, a sad moment for us. And then, uh, shortly after, my husband’s grandmother who was suffering from the disease also passed away. Uh, so the time was right for me to, to get involved with the board and just trying to, you know, kind of turn that sadness around and just kinda help some other people, um, you know, work towards the goal of, of finding cure.
Brad Caruso:
Yeah. Without question. And, and what I, what I love about it is, you know, the fact that, you know, now you, you were personally affected. I don’t love that fact, but the fact that now, you know, you’re giving back now and helping going through it, you know, you have personal experience, I think it’s so integral to the not-for-profit community. And I think it is what draws a lot of individuals to work with organizations and get involved is that personal connection. Uh, and I’m, I’m really sorry to hear you know about your loss. It, it is a very hard thing to go through and it definitely, uh, rattles us all. Um, but but appreciate that you got involved with the organization and, and certainly, uh, are helping in different ways. So a as a board member of the organization, you know, what, what challenges do you face and, and how have, how have you kind of brought your personal expertise to the organization and experiences to, to help the organization?
Stephanie Mansour:
It’s definitely tough, you know, as a small, we’re a large organization, but we’re also small as well. You know, being in a, a small state and being a small chapter. So definitely had a lot of obstacles, um, you know, from staff, uh, staff shortages, you know, financial resources, um, you not having access to all the necessities that we need to really to run the organization, especially during Covid and you know, not having everyone present and, you know, in an office together. It’s just ways that I’ve tried to, you know, join in and, and help is, um, so last summer, um, you know, Erica, who brought me into the, the organization and my husband and, uh, a committee that we formed, we decided to form a, a golf committee. And we started the golf to end ALZ. So our objectives was to organize this event and bring a bunch of golf enthusiasts together and bunch of Alzheimer’s supporters and create an impact for the Rhode Island chapter of the Alzheimer’s Association.
Stephanie Mansour:
So we brought about a few hundred or a hundred little bit of a hundred golf enthusiasts and some sponsors, and we were able to raise about $25,000 for Rhode Island chapter. So that was just a really great experience. Um, kinda one of the first things I could do as a board member. Um, and then this past summer, um, in August, you able to kind of build on that achievement and have a second golf tournament. So it was really great, um, experience kind of to turn kind of some of the, the sadness and everything that comes with Alzheimer’s and just kind of bring a lot of people together. One thing that you’ll find, um, as Donna mentioned, is, you know, being, you know, number six, um, in those top diseases is when you go and you, and you talk to people, almost every person that you talk to when you bring up this disease is that either they’ve experienced it themselves, their spouse, their cousin, that they know someone that’s has, has the disease. So it’s just, it’s so pronounced in the community that when you’re having an event, it’s really easy to get people involved because so many people have been affected by it. So it’s really great to kind of turn this into a fun event, into something that can really, um, you know, bring, uh, awareness to the cause. So it’s, it’s really, really great and, um, and a great experience.
Brad Caruso:
Yeah, awesome to hear. And glad you got a successful golf outing. I think, I think it, you know, COVID, pre covid, post covid, it’s been a lot of discussion about what are successful events and it’s really what works for your organization. Like you said, it’s a, you know, big community building event. So having it outside, doing something where a lot, you can get a lot of people, um, it’s helpful. And I know, you know, a lot of our, our listeners here are not-for-profits and run not-for-profits. And I know, you know, it’s always a common question about what do I do for an event? How do I, how do I pull that off? How do I make it successful? So, uh, appreciate you sharing that. One of the things I always like to, you know, get out there is what are some of the, and I’ll, I’ll pass it over to you, Donna. What are, what are some of the myths that you hear, uh, often and how do you debunk those myths?
Donna McGowan:
Well, I just, I think that it’s not gonna happen to me. It’s not in my family. Um, you know, we can’t talk about random selection enough that it’s truly purely, you know, almost maybe 90% random selection. Right? The gene is on, on the middle, minimal side. Um, before I get into anything else though, I just wanna say Ms. Stephanie is being exceptionally humble. She was a brand new board member to the organization. The board is in rebuilding mode. So we’re, um, not trying to find ourself, but we’re trying to navigate that ship together and come together. But there’s a lot of new faces and Covid really put a dent in everything, right, with the isolation. So we’re in rebuild mode. She came on as the new kid on the block and she said, I’d like to do this golf tournament. I was like, wonderful. And she just was, you know, projecting her numbers.
Donna McGowan:
I didn’t have to do anything, but just say, yes, you can have it on this date. And off we ran and we tried to support her on the back end as much as we could. Um, and she has run two magnificent significant funding events. Now, everything we do in the community, I mentioned some of the stuff that we do, everything we do in the community is free, but we have to pay for these services. But what pays for the services are funding events like Stephanie’s Golf to end ALZ, and of course our walks. I go walk across the country every fall. There’s over 600 walks across the country that are happening now, while as I speak. So, uh, I just wanna shout out kudos big time to Stephanie because she has done a fabulous job with the assistance of her committee and another board member, Erica Olobri and she is just, she’s got a piece of my heart and, uh, she came on the board running ready to go, which was amazing.
Brad Caruso:
I love hearing that. And it’s the true power of a CPA.
Donna McGowan:
Oh she had all the green accounting sheets out. Every dollar accounted for, it was wonderful. Absolutely wonderful.
Brad Caruso:
Yeah, we do more than clean press and alters, so it’s good. Great job, Stephanie. Um, so I guess bringing us to current times, I heard that November is caregivers month, is that correct?
Donna McGowan:
Yes it is, and that’s the time we set aside for caregivers to honor them.
Brad Caruso:
That’s great. So, uh, in your opinion, what, why are, why are caregivers and families so integral to helping with this disease and, and those dealing with it?
Donna McGowan:
Well, I think that they want to remain at home as long as they can. That’s point A. Point B is to hire outside services, to take care of that loved one in the house is probably not within most people’s budget, right? It can be very, very expensive. So it’s, it’s not an option for a lot of our folks that are here in Rhode Island. So the family bands together, it’s usually one that steps to the plate to provide that care and navigate the system and they get backend support from others. Um, but you know what, it is such a difficult job. It’s such a labor of love, all caregiving, no matter what. The disease is a labor of love. But as I mentioned earlier, this has such a unique aspect to it. ’cause you’re grieving a loss that hasn’t physically occurred. So when they really forget who you are or forget that they just ate breakfast and every 10 minutes or are asking for breakfast, you know, just deal with that, you know, or they’re sundowning around 4:30 in the afternoon and you can’t get them in a comfortable position.
Donna McGowan:
Their anxiety level is very kind. I, it’s just a true labor of love. And you know, sometimes when we do our care consultations here with folks, you know, it’s time they have to let go. They physically cannot continue to take care of that loved one, um, because the behaviors have escalated. It’s just, it’s not safe to be at home. And that’s such a difficult point, turning point in people’s lives when they have to make that determination that I can’t do this anymore no matter how many family members I have. It’s just not the right thing to do for us, for the caregiver, nor for the loved one. So, um, it’s a, it’s a true, true labor of love. And, um, my heart’s go out to all caregivers, but there’s a special place in my heart for folks that are taking care of folks with Alzheimer’s and related dementias.
Brad Caruso:
I second that with respect to caregivers, you know, what, what resources, um, does your organization provide and what, and what other resources are out there. ’cause obviously, um, you know, everybody needs help. And I, I think it’s, it’s super important that there’s a lot of different support networks that can help, uh, caregivers especially. What, what resources exist?
Donna McGowan:
Yeah, again, we have lots of education, uh, for caregiver, you know, communication strategy, behavior strategy. So you’ve been diagnosed now what that’s for the loved one and family members or anybody that’s associated with that person that has been diagnosed with the disease or mild cognitive impairment and wants, wants to learn more. We have a series getting your Financial Affairs, legal Affairs in order, because, you know, this disease is extremely costly and usually they do. A lot of folks end up in a skilled facility, which is, except exceptionally expensive. And the family has worked their whole life for their modest little cape house and, you know, it could be gone in a flash. We see that. So we do a lot of, uh, financial training as well as legal training to make sure that their legal and financial affairs are in order, you know, and so they can move forward and hopefully hold onto their little nest egg as they progress into the disease.
Donna McGowan:
We have a 24/7 helpline, as I’ve stated, and the caregiver, or anyone can call that number at any time with any issue, whether it be referral resources or whether you are, you know, trying to, you know, calm somebody down that has the disease and you, you’re just at your wit’s end. You don’t know what you do. We will walk you through what you need to do, uh, at that particular moment in time. So that, that tool is wonderful. We locally have a plethora of support groups, as I mentioned on the phone, by Zoom or in person. It’s not one size fits all, so you get to select, but we also have a nationwide support group where it’s done online and you can just register for it. You can sit back and be quiet in your pajamas at three in the morning. It’s whenever it’s convenient for you.
Donna McGowan:
It is a 24/7 support group. And again, licensed clinicians are on the other end trolling to make sure that it’s working the way it needs to work. But it’s a wonder wonderful vehicle for those folks that don’t wanna get out of the house or can’t get out of the house, you know, where they’re not like social beings, but they want the assistance. So, uh, those are a few of the things we do. We just so big. We have a caregiver’s journey conference, Brad, that’s every April at the Crown Plaza. And you know, we’re at, we’re at standing room only now, you know, we took a hit during Covid, of course we had to do it on Zoom and we’re rebuilding. But prior to Covid, it was standing room only. And I would project this April, when we have it again during April school, vacation week. It’s gonna be almost sold out if not sold out.
Donna McGowan:
And it’s an all day event. It’s free. Um, and it’s breakfast and lunch, or we have a couple of keynote address speakers. And then you break out into classrooms and you pick the classes of your choice and that’s what you go to. We usually close the program with something fun, chair, yoga, some kind of musical stuff that’s very exciting for both the person with the, with the disease as well as other folks just attending off the street. You don’t have to have the disease to come to this. You don’t have to be a caregiver. It’s called the caregiver’s journey. Anybody can walk in off the street. But I suggest that once our booklets hit a website and hit the street, which would be probably in February, that you register as soon as possible because it is free and it does sell out.
Brad Caruso:
Yeah. And I, and I imagine it’s a big relief that it’s back in person.
Donna McGowan:
You know, everything for me is a big relief that it’s back in person. I mean, we just, just, we just got off of our providence walk, which we have five walks in Rhode Island in the fall. And, uh, Providence was amazing. We’re not where we should be, but we had 2000 people last weekend and it was amazing. And, um, I was just so good to be out there and without rain. It was the only one of the five walks that we didn’t have to go through rain and wind. But it was just so great to be in providence and see that many people come together. Um, you know, I think when you’re struggling and dealing with this disease, it tends to make you isolate yourself. And it’s like you’re in it by yourself or your family’s in this battle alone. And you’re, when you come to our watts, we do a 15 minute flower ceremony.
Donna McGowan:
And the flowers are, the different colors is one color of your caregiver. One if you have the disease, one if you’re an advocate, etcetera. And one, if you’re, we’re helping for that first survivor. And that’s usually held by a younger child at the end, a white flower. But when you see those flowers, they’re pinwheel flowers. And when you see them go up, and I have the pleasure of looking out ’cause I’m always at the stage area. Uh, it’s just, it’s incredibly amazing because this whole sea of color comes together. But you look to your left and you look to your right, and at that point in time, you know, you’re not alone in this battle. There’s lots of other people just like you, right? And they’re in it to win it. They’re in it to slay the disease, uh, which I predict that we’re gonna do. I really predict we’re getting very close to have a protocol to extend out good quality of life. So these are exciting times. We’re in the era of treatment right now.
Brad Caruso:
Love it. And, and on that topic, what is the future of addressing this disease as a whole? Or what, what, you know, research is out there being conducted that, that’s supporting that.
Donna McGowan:
Oh my God, there’s so much research. There’s a couple of studies right here in Rhode Island going on right now. US Pointer study. It’s here run out of Butler Hospital. And it’s looking at, um, non-pharmacological, it’s exercise and diet, uh, and nutrition, right? So, uh, the significant wonderful results coming from the US Pointer study, which is a national study. There are five sites in the country that are conducting it. And Rhode Island has been selecting as one of those sites. So that’s very, very exciting. But there’s blood biomarkers, you know, as simplistic as going into your GPA at some point and taking a blood test. And the blood test can determine whether or not you’ve put Alzheimer’s in the blood. So it’s, the research is hot, there’s a ton of it. And there we’re determined, we’re determined to get rid of this disease. So, and like I said, we do have Aduhelm and LEQEMBI right now was two drugs that have been approved just recently by the FDA and Medicare.
Donna McGowan:
So we have those infusions. So the key to this is early detection, getting a diagnosis. It’s not a bad thing. If you’re forgetting, you know, you’re putting your keys in the oven, that doesn’t necessarily mean you have dementia or Alzheimer’s disease. It could be that you’re trying to process too many things at one time. You run into the bedroom, put the light on, and you say to yourself, what am I doing here? You know, it doesn’t have to be dementia, but if you are not, if you’re having difficulty managing a checkbook right? Or remembering to trace your steps or you’re in your car driving and you get lost and you’re going around the block, okay, those are things that we need to key into. Those are things we need to report to our general practitioner, because the earlier you get diagnosed, we now have treatment options, but you have to be treated in early onset. So you can’t take these drugs if you’re in the middle stage. They don’t work. They work for folks that are in the early stages of the disease.
Brad Caruso:
Yeah. So, you know, just based on those facts, I think it’s great to hear the progress and it’s great to hear the work that you’re doing as well as the work that the research fields are doing to solve this. But being alert, because, as you mentioned multiple times, and it’s important to keep repeating it, it’s random, could affect anyone in any, anywhere, any time. Probably later on, you know, mid of your life. Um, it’s good to be aware to talk about these things with your general practitioner, with your doctor that you see and identify it. It’s good. As you mentioned, the treatments are in early stage, so the earlier you identify it, obviously the better. And as are treatments and our pharmaceutical industry puts out certain medication or drugs that can assist with it, you know, obviously it’s better, as you mentioned early on, it’s better the sooner that you can identify it, the better and, uh, increase the quality of life Absolutely. And longevity of life. So, uh, important. I appreciate you bringing that up. And, and you know, I, I like that we reinforce these topics and, and reinforce the concepts because not everybody’s aware. I I know I, you know, before this conversation, I can promise you I wasn’t aware of, of that. Um, you know, I, I felt that it just, just one day it just happens and you don’t know it.
Donna McGowan:
I mean, a lot, a lot of times there are misdiagnoses in the fifties, it could be depression, change your life, you know, I I I’ve come across lots of folks that have been misdiagnosed, and then when they finally things started progressing, they got to the right group that they needed to be in, and the diagnosis was spot on. So, um, yeah. I can’t reinforce that. If things are going awry, it’s okay to bring it to your GP’s attention and take a mini card evaluation. Right. It’s okay. Um, like I said, right now we are all about awareness, but the sooner you’re aware, the better we can deal with this, uh, together.
Brad Caruso:
Yeah, without a doubt. And, and on that topic, obviously, you know, the, the work your organization does, the work that, you know, the Alzheimer’s Association as a whole across the country, does, um, you know, how, how can the public, uh, help you or, and participate in your in activities? And, and you mentioned this multiple times, but once again, I like continuing to share this information. How, how does someone find more information?
Donna McGowan:
So again, they can call that 800 number +1 800-272-3900, um, during the day, they’ll, they’ll get us here or, uh, of some of our staff here. Some of us are out in the community, of course, but they’ll get the message through us during the day. They can call after hours and leave a message. And, uh, they leave a message with, I say, those licensed clinicians will get a report in the morning. And what whoever we have to follow up with, we will. So it’s a, it’s a wonderful system. The other way is you can just go to our website. If you’re inclined to go to the website, a lot of people don’t wanna go to the website, you know, they have difficulty. We will help you navigate it. You just, again, need to call us and we’ll, we’ll navigate with you. But the website is www.alz.org/ri.
Donna McGowan:
And so we need volunteers. We need lots of volunteers, <laugh>, um, we need, we’re looking right now, the board has been, has been charged to go out and, uh, nominate new additional board members. So we’re in recruiting mode right now for board of directors. Um, we need corporations and small businesses. We need them to be involved and engaged, whether they form a team at one of the walks, you know, Providence is the largest walk we have. Uh, so honestly, if you’re not there and you’re not advertising at that walk, you’re missing an opportunity because the, the very, very large walk. But we have a walk on Block Island, we have walks in Westerly. We have a walk in Newport in our recently new walk we just put on this past fall is in North Scituate on the town Common. And that was amazing. Again, amazing.
Donna McGowan:
Almost 300 people came out in the rain and it was brandy new. So, um, they, you need to get involved. My vision is to love to see companies with ’em, CVS, you know, having their own T-shirts and their own color at the walk and, and, and organizing that way. And then having maybe CPA firms competing against each other, or who can we, you know, raise the most funds at the walk? Or as Stephanie came on board, she said, I wanna do a golf tournament, can I do it? And we said, absolutely. And she made it happen. And she made it seem seamless, and I know how much work goes into it because we used to do golf tournament and, uh, you know, they started withering away. People got older, they lost interest, you know, pricing was too expensive, you name it. So, and then this ray of hope came through the doors and she resurrected it, and she was fabulous. So we need volunteers. We can’t do this work alone. We always say we’re staff, we’re staff supported, volunteer driven. And that’s what we need to get rid of this, eradicate this disease because it is so large, we could never hire and pay salary and benefits to all the people that we needed to get, help us get rid of this disease. It’s a huge undertaking.
Brad Caruso:
Yeah. And, and it’s great that you shared the stats on the events and, and the participation. I think any, you know, corporate sponsor, you know, hears 2000 people are crossing there and, and local community too. I think a lot of corporations are very much in tune. Yep. Um, to giving in the communities they serve. Um, and, and I know our, our firm especially, you know, we’re, we’ve been about that for the last 50 years, but, but, uh, very specifically, I’m sure a lot of other organizations have that, have that mindset. So, and, and I just, I just have one final question I have to ask Stephanie. What’s your, what’s your key to success here for the golf outing? ’cause I’m sure a lot of people are wondering.
Stephanie Mansour:
Well, I think this year we, um, we changed locations. We had a beautiful, um, country club on the water. And we had some great sponsors Withum was a sponsor. And we had some, um, some great sponsors, some great events, and some fun activities on the golf course. So, I mean, you just gotta ask, I’d say that’s, that’s the key thing. It doesn’t hurt to ask. And with Alzheimer’s, there’s just so many people affected by the disease that almost, I’d say 80% of the people that I mentioned it to had some sort of connection to it. And as soon as I mentioned it, that they were more than happy to make a donation, to sponsor, to plan the tournament. We had a wait list, people that just wanted to play at the tournament this year. So we are already gearing up to, to start year three. So stay tuned.
Brad Caruso:
That’s impressive that you had a wait list. ’cause it’s hard to, it’s hard to fill a golf course. It’s not easy. And, uh, yeah, to your point, you have to ask. I did, I did a fundraiser last year, and I realized in doing that, how many people were affected by the disease we were fundraising for and how, and, and you would never know. And if you, if you never asked, you would never know. And if you ask and someone says, no, that’s fine. Not everybody, you know, everyone’s affected by something different. It, and it’s definitely, uh, it’s definitely an exercise and just ask. And this is our, this is our, our pitch. This is what we do and, and it works out well. But this, this was a great conversation. I really appreciate the information and I’m sure our listeners, there’s a lot more information, uh, you know, as mentioned by Donna and Stephanie on the website. Check it out. I think it’s important to learn more about the disease, learn more about what the organization does to support you learn, have more factual information about what’s, what’s going on with it. Donna and Stephanie, you know, thanks for being on the show. We really appreciate it.
Donna McGowan:
Thank you. Thanks for having us.
Brad Caruso:
And Warriors out there. Thank you for listening. Appreciate your time. And, and as you heard multiple times on the episode today, certain diseases affect many people and their families and could be random. It may affect you any day, any time in the future, and, and you don’t know when it’s gonna happen. And so, you know, that’s why the work of the Alzheimer’s Association is so critical. You know, they certainly worked tirelessly to raise funds to provide for research, to conduct advocacy, to help find breakthrough drugs, to help the disease and ultimately help the families that are in need, uh, and the individuals going through a very, very difficult time. So thanks for listening today. Subscribe and meet us right back here for another episode of WIthum’s Civic Warriors. Thanks, everybody.
