Speaker 1: 0:00

You got it. Good day everyone. Thank you so very much. I know you're like, you know, when they said 2 o'clock. Well, you know how technology is in today's day and age and once again it got us.

Speaker 1: 0:13

But you know I am one that don't give up and you know someone that say you can't do something or it ain't going to work. You know, sandra L, it's going to be like'm going to try it anyway, because I'm going to get it to work, especially when it comes down to the patient experience, especially when it comes down to bringing information in reference to the marginalized community and things that they should know and be aware of. Why? Because I am sick and tired and tired and sick of our community, especially our community, not getting everything that they should have when it comes to healthcare. I'm all for you going to the doctor, I encourage you to all patients to go to the doctor, but when it comes down to the marginalized and you're going to get an example of exactly what I'm saying Sometimes people got to see what you're saying in order for them to say, oh, I get it. Now I understand when I say the underserved, the marginalized community and the under-resourced community. Many times I'm asked, sandra, aren't they all the same thing? And my resounding response each time is no, they are not. There are three different aspects and sectors of the population, and two most often especially the marginalized and the under-resourced get overlooked sometimes because we're so busy trying to lump everybody into one pool. Everybody don't into one thing, they do not. So today it was great pleasure.

Speaker 1: 1:53

I am fortunate enough, we are fortunate enough to have with us Mr Art Steele. Not only was he active in the professional world, but he actually has a condition, a health condition that many of us do not know about. We have not heard about it. When we have heard about it, it's in little, small circles. I heard about it because my oldest sister passed away from this very condition, so I know about it because personally I felt it and so many others that are listening today or listening at whatever time you're listening to the podcast, also have these signs and symptoms.

Speaker 1: 2:37

They just wishing them away, and we've got to stop wishing things away and we've got to start talking to our doctors. And then we don't feel comfortable talking to our doctors. And if we don't feel comfortable talking to our doctors, many of them are trying to help us, but for some reason you don't feel comfortable talking to your doctor, you need to actually look somewhere else for a doctor that you can talk to. But that line of communication needs to remain open. For those doctors that were on my sister's care, I thank them very much, especially in the clinical trial that she was a part of. I thank them for accepting the clinical trial.

Speaker 1: 3:13

Unfortunately, she lost her life due to a time issue, but I'm thankful, and I'm especially thankful for those doctors who those clinicians that are working on behalf of Art Stills' life and making sure that he is around for a very long time, because we all need him to be around for a very long time. You might be saying well, sandra, what health condition is that you're talking about? I'm going to go ahead and turn this over to Art. I'm going to have him explain who he is, what he wants you to know about the condition that he is living with, and then we'll get started with the questions. But once again, during this patient experience week, please take high notes of what's going on and what we're talking about. Mr Art Still, could you please go ahead and let everybody know who you are and what condition it is that we're speaking about today?

Speaker 2: 4:07

Well, I was going to say, sandra, I appreciate the introduction and all too. And again, you know, I always tell people, you know, because I played in the NFL I was just a job, taking care of my family and all, and everybody has a job, so everybody's special and all, and that's the way I look at it. It was just a job taking care of my family and all. But again, playing in nfl gives you a platform where you know people tend to maybe listen a little bit more and all, especially if you've been experiencing some conditions, like you said, your sister experience and, um, my mom, my, my, uh, you know when you explain your sister and all this brings, I got a nephew and all two had amniotosis and all too. And that's just part of the story, but it's just a matter of. And then you hear things too. You said within our community and all, where you know it's that old line if you don't know your past, you're not going to know your future and all. And I know one of the ingredients in that what's the most important game we're playing right now in his life? And so if you don't know your, you know, pastor, three family members and all two parents and all you know you can prepare yourself for the future and also your own kids. You know, pass that on Sometimes that you know we live in a world now. Now knowledge is starting to get out there. That's why we are out here talking about it right now.

Speaker 2: 5:22

But just a little background. I'm from Camden, new Jersey, right across from Philadelphia, grew up in the project Centerville and the only means of getting out of the projects, you know, economically I have five sisters and four other brothers and I had my parents, so it was 12 of us. But the only means of getting out of that economical area was using my athletic skills and all which a lot of members of my family and within the community use as a means of going to college and getting education and doing something with themselves and all too. So I had the opportunity. I went to the University of Kentucky and then from there got drafted by the Chiefs in 1978 and got drafted right behind Earl Cam. I was the second player drafted and all and then played 10 years with the Chiefs and two years, you know, buffalo Bills and all too.

Speaker 2: 6:10

And I just like to maybe give a little background because you know, as you brought up, there's a lot of negative things as far as a reference to you know, within our community and all about pharmaceutical companies, doctors and all too, and I can give you a history and all pharmaceutical companies, doctors and all too, and I can give you a history and all it kind of developed with me and all. He's my brother and all. I got a brother 12 years ago had he had a heart transplant, matter of fact, he had it up university of chicago medical center and all too. And um, at that particular time, all the symptoms and all that he had. He had the carpal tunnel stenosis in the back, he had the neuropathy in the feet, kidney problems. That's when he started affecting his heart and then eventually he had to have a transplant, all kinds of things. And so for me, you know, seeing him go through the process and seeing medication and seeing all the doctors and basically having all these surgeries kind of put a bad taste in my mouth. I was not anti-doctor, anti-medicine and all, but I just didn't want to have nothing to do with it because I'd seen the process my brother went through and eventually they had to open him up and do a heart transplant.

Speaker 2: 7:23

But the crazy thing about that is, I just found out recently. You know I don't know how long you've been know about the amyotoxin ATTR affects, you know, one out of 25 African-Americans and all. So what happened to me? Through the NFL and all, we have a program. We go down to Tulane Medical Center every five years. So the first time I went down there, I think it was in 19, I mean 2019, and I had the heart problems already and I can. You know, the crazy thing about this is I can track my history going back from playing ball. All the symptoms that led up to my heart problems were all symptoms of ATTR, a genetic variant that affects, you know, one out of 25 African-Americans and all that you know. I can track it all the way up until I had the heart problems.

Speaker 2: 8:12

And then what happened was when I did go visit down at Tulane in 2023, Dr Keith Furtinam he works with Tulane and he works through the NFL Players Association through this program. He works for Tulane and he works through the NFL Players Association through this program a cardiologist Knew I was kind of anti-medicine, almost doctors and all too. So he sat me down and he's African-American doctor and he reasoned with me. He said hey, I tell you what, give me a little background on your family history. So I started off with my brother and then I kind of knew where he was going with this, and all too somewhat, because when I started tracing all my brother's symptoms and each symptom, the doctor, medication, surgery on his back he had stenosis, I think he had an orthopedic doctor do the surgery nicked his dorm. Basically he was on the table on his face for about 10 hours until another doctor came in had to fix it, but it never was fixed.

Speaker 2: 9:11

Up until this day he's still having serious problems. He's in a wheelchair, he has the cath and all. He's been cathed in probably 14, 15 years, manually and all as a matter of fact. I talked to him today and you know, those types of things scarring basically not only physically but you know, psychologically and all too. So, seeing all those things.

Speaker 2: 9:31

And then, you know, talking to dr um ferdinand and he started asking these questions. I gave him all the symptoms. All the symptoms that he had is the symptoms that I have and all too. And so then I started talking about some other family members. I got a brother, my brother's married to my wife's sister. He has the exact all the symptoms, matter of fact, he's got a heart pacer and a defibrillator in him. He hasn't been tested, but I can almost guarantee you that he has it too, and I got some other brothers and sisters with some serious symptoms and all that. He has it too, and I got some other brothers and sisters with some serious symptoms and all.

Speaker 2: 10:10

So Dr Ferdinand told me he said when you get back to Kansas City, do a genetic test to see if you have this amidosis ATTR. So when I got back in Kansas City, took the genetic test which is a basic, they just swab your mouth like with a Q-tip in your mouth, nothing, you know, don't have to draw blood Found out that I had it a couple of weeks later. Then I told my brother about it. He had a genetic test, the one that my brother James, who had the heart transplant. He had a genetic test. He has it. Then come to find out later on.

Speaker 2: 10:41

I just found out this maybe a year or so ago with my brother my older brother, no, when we started talking. When I finally told him in 2023 about this. He did a background check. He had some records of his son that passed away in the hospital because they misdiagnosed him. They gave him, I think, too much pain painkiller or whatever. I don't know if they thought he had sickle cell and plus he had the amidosis and all. So I don't know if they were aware of it and all too.

Speaker 2: 11:13

But that caused his death, you know, four years ago, and so you know, with that said, the first thing I thought about when I'm starting getting out this information about amidosis how affect, you know, african-american family and all first thing I think about my family. I got five girls, six boys. I got just had my 25th grandchild, got a 26th one coming up in September. So the first thing you know I'm thinking family-wise, just my own kids, and I got. Four of my kids are firefighter and oldest one is 41 years old and he already had shoulder replacement. He's having neck problems, some other things you know, I think even with his heart and all. So he's the one that's going to be doing the net probably. Well, I got eight of them said they're going to do the genetic testing and all too in reference to that.

Speaker 2: 12:02

But then you know, when you start thinking not only that family, then I'm thinking among other families, football. You know all the players and all how many players that I've played against carpal tunnel, back problems, foot problems, you know, as far as swelling, and I got hand problems as far as gripping and coldness and those types of things. And then even a point too, of nighttime, you know, having those night sweats. You know, I thought maybe I was in pretty good shape. I thought maybe I used to joke with myself I'd be sweating at night. I thought I was playing a game. You know, when I get up I thought I was going over to the stadium to get paid, man, but there was no money there. But you know, it was just a combination of things.

Speaker 2: 12:57

And so what I realized is, you know, if we don't talk about these things, we don't get this information out within the community, and all Everybody's left, you know, with the bag open, so to speak, symptoms that we might think like as a carpal tunnel. People might think it's from typing or grabbing things and all. But when you get accumulation of things going on, it could be that amidosis and if it's not diagnosed, the same thing will happen. The same thing that happened to my brother will happen to me or anybody else. Eventually it's going to affect your heart and your organs now, your liver, your kidneys and all too. So that's with me. It just made sense and you know of of, of not only my own family but not only with you know my family as far as football, but within my own community and all too.

Speaker 2: 13:39

So we started Still for Life for a reason just to get awareness out and also early detection. You get awareness out and people understand the symptoms and all and they get early detection. They can. They can avoid a lot of serious, serious, you know repercussions from. You know from the heart or the kidneys and those types of things.

Speaker 2: 14:03

And that's the reason why you know and, like I said, I appreciate you for inviting me out and all too and you know talking about my situation and all too. But it's important that we all discuss and talk to each other and know our family history, discuss and talk to each other and know our family history. And then not only know our family history, I'm not saying getting to other people's history, but we got neighbors. Now we got family and friends. That again, if you see some things going on, we know the symptoms. It's always nice to talk or encourage, not that we're doctors, but those symptoms can have. If you put them together and all you can put the piece of the puzzle together and can avoid a lot of serious illness down the line.

Speaker 1: 14:44

You know, and I'm so very glad and I'm so very thankful to you. One because you know what, as a former NFL, once a football player, always a football player you know what I'm keeping this to myself. You know I have to hate everybody for everybody, and put on this big athletic shoulder, where you know what, don't come around me, don't talk to me. I'm not going to share my story, but that's not what you did. You actually said this is impacting me and I always say you know what your family history is important. I've written a journal. That's a personal and family history, because when I wrote the journal, I wrote the journal because one, when we were going through COVID, everything was blamed on COVID, just like you said, with carpal tunnel, you got carpal tunnel. Everybody say, oh, you got carpal tunnel, that just comes from work, you don't need to worry about it, you wear this brace for a couple of days. It was actually those family history conditions that we actually had that we weren't aware of the fact that we had it, because for a very long time, our community and it could have happened to other communities as well, but I can only talk about our community. Our community didn't talk about these types of things. Our community, the adults, learned about these things and they kept it in adulthood, but as children we didn't know about it. As teens, we didn't know about this stuff until it happened to us, which was a lot of times, much later in life. So when that actually happens like that, you can't be proactive. So we've got to start working together and I'm so grateful to you that we are, you know, working with life and making sure that the community is aware. We can't keep keeping these secrets, guys. These secrets are killing us. These secrets are going to wipe away our community. So, whatever goes on, we're taking a chance by not talking about it. We're taking the chance by not sharing it, not saying, hey, you know what I used to make all this money, but life is life and life got the life in and now, because of it, I'm now going through some changes. I'm now seeing some things that I could do differently, my community could do differently. I want to be that cornerstone, and I'm sure that there are others that might be listening, that are listening to this or watching us live, that are saying Sandra, you know what I can help, you know what I got the way to help, don't just help me, help your community how, like I just said, you know what it takes a village. We can't do this alone. It takes a village to come together to start sharing these patient experience stories of this is what I went through.

Speaker 1: 17:50

These were some of the symptoms and you caught him early on when he was speaking, which was one of my questions was okay, well, while you was playing football did you notice any of these symptoms? And it was just like, okay, they're gonna go away right, not knowing that. Seriously, there's something wrong with me that I need to get checked out. And, guys and ladies, the doctors cannot read our minds if we don't start speaking up when we go to the doctor and say look, I know this is carp tunnel, but I also have these other symptom signs going on. Could you at least check, especially ladies, because a lot of us a lot of times get gaslit into certain things.

Speaker 1: 18:33

Important tool is called our voice and, just like Art is using it, not so that he could retire and sit home and be like whatever happened to people that happened, but so that we could become more involved in getting that patient experience story out. We got to do better. We have to. If you have a story, please share it. Please consider sharing it, not just with yourself or your close loved ones, but with your community. Sometimes they'll listen, sometimes they won't, but guess what? You did your due diligence by letting them know. You did your due diligence, but not just speaking about it and letting it go away, but you did your due diligence by keeping it in the media, keeping it on the not on the sidelines, but keeping it in the fray, where people could get to know what's going on and where they can go to get help and how they can go to get help.

Speaker 2: 19:25

So, art, I'm thankful to you that you did say I had some symptoms, right, Sandra, I was going to say too, and I, you know, we all too, and we all grow in different environments. But my mother you know five of us boys she was a you know, you call her all dog man. She was only about that tall man. We boys man. She'd be pointing at us, man and we'd be shaking like a leaf and all. But the thing is one of the things my mother instilled in us and all too, especially myself and all. My mother used to always say if you see something wrong or something going on in the community and you can have an effect as far as a positive effect and you turn your head and just go away because it's not affecting you, you're just as guilty as whatever is going on in the community and all too. And that's the way I kind of look at it. I mean, it's just to me. It's funny. Like you know, I go to these charity events and do things in the community and all, and usually you know you want to ask a person their name and usually talk on my side. You know when I'm talking folks, I'm asked you got any swelling in your feet? Hey, how you got any carpo? You know just all those symptoms and all too that. And I'm finding folks, man, that you know have.

Speaker 2: 20:39

We was in detroit, um, a month ago and all, and they did genetic testing at this, you know. So we was doing a program and it was about over 40 something people and they did free genetic testing on that program. Right, there come to file. Two weeks later, four folks in there had didn't know it had amyidosis, so wow, but it was just. You know, that's that's why it's an eye-opener and all too, because a lot of the folks that may be having issues and they said, even in the past, um, I can go back to my great-great-grandfather. He had heart problems, you know I, you know in his book they used to call him the doc dr james. Still, they used to call him the doc Dr James Steele. They used to call him the Dr Lepines. When I was reading his book they said he died of heart disease. So it's in the history and all. And that's why, you know, we talk about passing the history on and some people want to turn a blind eye and like, in my situation, it wasn't, I didn't know anything, only how I found about it was 2023 through Dr Ferdinand, and then too late If he didn't say anything to me. Now who knows where I would be health wise right now, and that's why to me it's almost like you got to pass that information on, especially something that benefits yourself.

Speaker 2: 21:54

And all and again it's a combination of things too, because, you know, I kind of look at the healthcare industry. You got the pharmaceutical companies, you got the doctors, then you got the patients, you got the caregivers and all too. So the doctor is doing everything they can on their part, and I'm not saying all doctors, but most of the doctors I know are pretty sincere in what they. They're limited in somewhat, in somewhat. You know what they can do. Same thing with the pharmaceutical company. You know you get bad names and all too, but trying to work as a team to find a solution to the issues and problems. And then I look at myself. So if I'm part of that team, what am I doing on my side to enhance, you know, my health?

Speaker 2: 22:37

A lot of times and I use the example, like you know, you see all the commercials about these, those type of thing. You know. You see people, man, I have these issues either drugs use doctors, but are we as patients or, you know, taking those drugs? What are we doing for our health? Are we watching weed? Are we doing exercise? We're. Are we watching what we eat? Are we doing exercise? Are we getting sleep? How are we handling stress? Those things can enhance and I always use that term. You'll see.

Speaker 2: 23:07

If you go to the website stillforlifeandallorg, you'll see we say extending your shelf life. The thing is, we can extend our shelf life by just little simple things. You don't have to kill you, you don't have to go out there and try to be a bodybuilder. You can make sure you get to sleep at night. You know, staying up all night long is not too good for you too.

Speaker 2: 23:24

And those are just what we put in our body. You know a lot of processed food, a lot of sugar. We find out now that contributes to, you know, our health issues. So that's where it takes on our part not only be listening to people like ourselves or doctors or maybe people talking on the subject, but digging in and doing your own research and make your own informed decision, and that based on what I say or somebody else or you might say or whatever. Making informed decisions. And that's been the way of my life, because even when playing ball, you're always trying to find how you can get a little better and play a little longer, and so it's the same thing for our house. It's a matter of doing the research too you know what and you're so.

Speaker 1: 24:13

You're so true about that. That's why I say you know and that's why I give this disclaimer in reference to speaking with sandra l. This is not about bashing the doctors, because, you know, long, long time ago doctors could practice medicine, so doctors could be in your room with you for hours on time.

Speaker 1: 24:35

Sometimes they could do home visits they could do all this stuff, but when medicine became business, well, all of that stuff got stripped away. So there are a lot of doctors out here that go above and beyond where they could be going or where they should be going, or even where they will get paid to go, because now they'll get dinged if they spend five extra minutes with a patient.

Speaker 1: 25:00

So, we can't say it's all doctors are bad, because all doctors aren't bad. There are some doctors that are great doctors and they go above and beyond where they know they should be going, where they know that at the end of the day that they're going to get dinged, or they know that at the end of the day that they're going to get dinged, or they're going to get called into the office, hey, why was you spending all this time with this patient? So, while they want to a lot of times and we all work, because we why? Because we have to work, because if we were all walking around here meeting this, we probably wouldn't be working right. But our doctors can only do so much right now to help you as a patient. So they have rights and responsibilities.

Speaker 1: 25:40

Exactly, there are pharmaceutical companies. They do what they can. They have a huge part. You know, last year in November, for the first time and I have to put this shout out For the first time time I had a pharmaceutical company call me and say hey, sandra, can you come speak? And this AstraZeneca so I have to put that out there who actually invited me to that table that I'm always talking about. Y'all are keeping the patients away from the table, and so they invited me to come and speak. They wanted to hear what it was that we needed as a patient, what it is that we wanted, what it is that we needed, so they could try to make a little bit of dent. Sometimes they do more than they can, sometimes they don't do enough, right, but they have rights and responsibilities that they follow Same thing with us as patients.

Speaker 1: 26:29

Patients have rights and responsibilities. One of our rights is to receive optimal healthcare. I've been on the bandwagon forever and I'll continue to be on the bandwagon forever, when it comes to the under-resourced and the marginalized, which you're considered a marginalized patient because you're not poor and you're not rich, right, but you have enough and you have the resources around you to get what you need to have, get what you need to get to continue on the road of healthy living, or as much healthy living as you can get. So that marginalized patient. A lot of times, though, they're left out of the mix. Nobody's concerned about the marginalized patient, which is why we have to use our voice to speak up. Nobody's. Oh, they make too much money, they don't qualify for this. Just because we don't qualify for it doesn't mean we don't need it and doesn't mean we shouldn't have it right. But if we, as patients, don't do our right, which is to speak up to our responsibility, which is to self-advocate for ourselves, will always be at this point where we're at, where we're behind the eight ball trying to push forward, and we can't continue to be behind the eight ball. We can't continue to be retroactive patients where we just waiting for something to happen before we make a move. We can't keep doing it. So it's our right and responsibility to self-advocate, to seek out the best, optimal healthcare, whether you're under-resourced, whether you're marginalized or whether you're underserved.

Speaker 1: 28:04

You need to speak out. You need to, you know, have events, community events, consider talking about the community. Community events where the community is learning right, not just you and you get the information. You go away, you don't share it with anyone but where the community is learning from you. So I'm thankful to you that you actually, like I said, I'm thankful to you. I laugh every time we speak, but I know that it's a serious. You know, amyloidosis is serious. Like I said, my oldest sister was diagnosed with amyloidosis. She unfortunately passed away on the operating table. There's things that you know, we know. Now that you know, we wish that we would have known them then. But you know, the fight was real to try to save her life, just as real as it is for us to try to save everyone else's life who might not know that they have amyloidosis, because when they go to the doctor and they have carpal tunnel, they're diagnosed with carpal tunnel and everything else goes away. Stop, um, you bring up another good point.

Speaker 1: 29:05

Before we end, you bring up another good point and that's genetic testing. For everyone that's listening, there are free genetic centers throughout the United States. I was actually fortunate enough to thank you, Erin Poyant, who is one of my LinkedIn buddies, for sending me the list. She sent me the list. However, when I got the list, it was about five minutes before we started the video session. It was about five minutes before we started the video session.

Speaker 1: 29:44

If you need to know about these sensors, where the free F-R-E-E genetic testing centers are, so that you can go and get some free F-R-E-E help, please reach out to me and say Sandra, could I have the list of where the genetic centers are? You know, later on more than likely in the first part of 2026, I'll have. I'll invite Erin to come in so she can share some additional information that she's working on on her end. But I do have the listing. I will most definitely share it because, yes, we have to take care of us. We got to take care of us right, and we can't take care of us if no one's doing it.

Speaker 2: 30:20

Hey, sam, you brought up good Erin. She's been very helpful to me and still for life, and all too. Because all you mentioned about the free testing and all if you go on our site too I don't know if you have, but the thing is it's nice because this goes out nationally and all too. So when I got resources, a page on our resources like amniotosis centers throughout the United States so they can go and choose, let's say, if they're down in Florida or maybe out in California, they got sites in all places amniotosis centers in these medical facilities and all that you can call and get information about locally in that particular area where you live at, and all too. But those are the things and all, like you said, of understanding the symptoms and understand the symptom. You know where you, you know resources and doing genetic testing and all that is you know. That's, that's part. But then the support system and that's where it comes into play.

Speaker 2: 31:15

I'm pretty fortunate. I call him my pro-law. So I done did 42 years of hard labor. I got a life sentence, but it was just. I'll give you an example. You know, especially you know we talk about the gender thing, men. We don't have no issues.

Speaker 2: 31:29

We go to the doctors, but usually Dr Sprayer is my doctor Amidosis doctor and we just seen him about maybe a month ago or so, and you think by now, after 2023, I'm opening up to the doctor and all. And so the doc asked me some questions and Liz is sitting next to me and he said he asked me some specific. Oh man, I'm doing great, I'm going back some old ways and you know the parole officer over there, liz, man, she's like this and she spilled the guts on me and all. But it was just one of those things and all. That's where you know caregivers working together as a team and again, sometimes it's that manhood. Then we come, manhood thing. So you know, while I'm right in front of dr spray, act like I'm upset at her and then after we leave I give a big hug way to go, girlfriend, she helped me out. Man, I could keep my manhood right there. You just kind of laugh about things, um, and that's. You know, that's if you take things too seriously and all. I mean you want to take it serious, but laughter to me is part of my medicine. And then you know some other things as far as rest and those types of things, but, um, it's, that's why a good support system and you know anybody want to get in contact with me, they can too, and all because that's how we spread the word and help each other out, and all because sometimes we don't have that support system as far as maybe in the home and all like my.

Speaker 2: 32:57

I talked from there. As soon as I'm finished I'll go down and visit him, but he's he's the one that had the transplant and he's having some more heart problems and all too, because you know what we're finding out. And again, I'm not a doctor that he done had this heart for about 12 years and all, but he still had the amidosis. So that amidosis, I think, if I'm not mistaken, is still building in there and can affect your organs even more so unless you get medication to stop it, slow it down or whatever. And I think he's having some. You know all those surgeries and all he had. You know, back when he had it back, the doctor really messed him up pretty bad. So you know it's that. You know support. You know we all need support. We got neighbors and all the two older ones.

Speaker 1: 33:43

You're right, we most definitely do. That's why I'm calling on all communities, whether it's a community of color, whether it's a community of women, whether wherever it is a community of you, you can do this on your own. You can get through your health challenges on your own. You can't. So, don't get me wrong, and I don't want you to say well, you know it's dangerous that I can't do this if I don't have help. But it does a whole lot of difference If in fact, we do it as a community. Community, if in fact we pull all our powers together and we actually come and we actually. You know, amlidosis is just one of the rare health conditions that we're now starting to find out about that have been embedded in our family. Genetically wise, it's just one. We don't know everything about it just yet, but we know that it's there. We see the advertisements now of them starting to talk about different protocols for amlidosis, different medications for amlidosis. We see it, but we need to raise it up just more. I don't want to say just a little more. We need to raise it up more because, as Art was just saying, he was at an event and it was actually less than a month ago and sitting there on speaking notes to the people that were sitting there that was participating in this event was the fact that they was going to come in not knowing, but they was going to walk out. You got amyloidosis, you need to see a doctor. Now they're on the road to repair. Now they're on the road, hopefully prayerfully. They went and they had a conversation with their doctors. Now they're on the road to repair. Now they're on the road to. We can fix this. This is some things that we have to do.

Speaker 1: 35:24

I ask everyone all the time I am not a clinical trial participant just yet. Even though I've had diabetes and I do have chronic kidney disease, my doctors right now don't have me as a clinical trial participant ever. What will happen is that when the day comes where I have to go and be a clinical trial participant, that's exactly what I'm going to do. Why? Because I know more about it now than I knew about it before. So I'm asking you, my sister who passed away I didn't find this out until it was brought to my attention by one of my other sisters that, hey, you work on the amyloidosis. You know, that's what Phyllis passed away from, and I actually had to go and read her obituary to find out that the only way that she received the care that she did is because she decided that she wanted to be a clinical trial participant. What occurred was that she had to wait while I fought tooth and nail with the medical team because they didn't want to allow her to have the surgery that she needed. So that waiting period added to the prolongation of the fact that she didn't have the surgery when she needed. So that waiting period added to the prolongation of the fact that she didn't have the surgery when it could have actually helped her even more.

Speaker 1: 36:41

So, guys, stop and ladies, stop waiting and stop sitting and stop second guessing and self-treating and everything else you do. Let's start looking at clinical trials how they can help our communities. Let's start looking at talking to our doctors how that they can help our communities. Let's start looking at talking to our doctors how that communication can help our community. Let's start partnering together so that we can bring a higher sense of urgency to these conditions that are impacting our community, because absolutely no one is coming to save us. That little yellow school bus that comes into everybody's neighborhood, it's coming into ours, but if we don't know it's there, it ain't stopping. So let's do what we can do at all times to ensure that we're getting the very best health care. Not just health care. We need the very best health care. All right. Before we close out, can you give us two to three tips that you would like to leave us with?

Speaker 2: 37:41

Well, you know, I would say too, you know you was talking about. As far as in reference to with the aminidosis, the ATTR, the fexam, and there's one, there's other effect. You know Portuguese Irish, I mean, there's one, there's other effect, you know Portuguese Irish, I mean there's a bunch of aminidosis out there and all too, but the one you know in reference to that American group, one out of 25, there is no cure for it. But the thing is they have product lines out there that will not let it go worse than what it is. They call them. And, like I said, I'm not in the farm, but at least if you get it detected you can take things that it won't progress and get worse. And that's where you know, where I'm at right now, and so hopefully no transplants or anything like that for myself.

Speaker 2: 38:31

But as far as you know, given you know things within the community, it's just man, it's almost like keeping your eyes open, not only for your family members, but you know the workmates, you know people, your neighbors and all, because you see things. Sometimes you see them suffering things and you know suggestions. You know and again, we're not doctors and all, but you know, as we learn things, it's a matter of passing them on to our young ones and all too. And, as you know, I'm a grandfather. You know passing on to my grandkids and all too, and it's just a matter of you know talking about these things within community and all, and then talk about the good things in being able to talk to other folks about it and bring awareness about not only just amidosis, like you said, diabetes. You know things that we can, we can pass on and things that a lot of times, it's not what we say is our actions, and all too.

Speaker 1: 39:28

You're dead right. You certainly got that right. It's not. Sometimes, talking is good I'm one talking is very good, but you have to put action behind that talk. In other words, if you're not doing that, you just waste the air, and none of us have time to waste air. None of us at all have time to waste air. So, as we're talking, so are, so are we doing? What I would like to bring up before we close is that Chicago, get ready, get ready, get ready.

Speaker 1: 39:55

On October 25th 2025, we will be hosting and we actually will be partnering with Still for Life. We actually be partnering with Chroma Health. We'll actually be partnering with Salam Wellness Center here in the city of Chicago, as well as Anthro Spa. We will be coming together to host a summit, a four-hour summit, on what we need to be doing, what to actually order better order our health concerns and our health conditions, and what diseases are out here that we don't know about. Like what are they hiding from us that we don't know about? Like what are they hiding from us that we don't know about? Like sharing that education so that all patients become big, can become empowered and engaged in their own healthcare.

Speaker 1: 40:46

I could be engaged in your healthcare, but I want you to be engaged in your healthcare, and without you being educated, it just will not happen. I don't know about you but me. I know that I only get one life. I promise everybody is listening. If you hear Sandra L has passed away, don't call my husband and say, hey, you know, we heard of this new treatment that you can revive her body and bring her back. I don't want to have anything to do with it, which is why I'm doing what I can while I'm here to ensure that not only I and my family have access to optimal healthcare, but my community as well.

Speaker 1: 41:29

I say this all the time guys, each one, teach one. Do not stop at teaching. Reach one as well. Each one, teach one. Do not stop at teaching. Reach one as well. Each one, teach one. Reach one. If we can get this going to a higher level, wow, like take a longitudinal study and look back. Look on five years from now. Look back and say, well, we did, we really did this. I feel good about the fact that you were actually able to help to bring a sustainable healthcare system where all of us, not one patient, gets left behind because they say they just don't know. So if you're in Chicago and you're interested in being a part of the program that we'll be having on October 25th, please reach out to me. All right, how do people get in touch with you if they want to help you and they want to actually get more information on you? Where can they find?

Speaker 2: 42:22

you, we have. And again, you brought up some terms and all, and you talked about Chroma Health and all. Oh, arnie, over there, man, he's been very we're just like. You know, you put both our heads there, then we'll make a butt. No, I'm just joking. Hey, I'm going to ask my brother from another mother and all. But you know and I think he brought up that point, you know what you were saying like all of us Educate to advocate. So I mean, that's part of it, that's what we're talking about. You know, we're educating so everybody can advocate for themselves and come together doing these things.

Speaker 2: 43:02

But again, my website is like still s-t-i-l-l, the number four, and then life l-i-f-e dot org and on there. You know, if you go in there and and again, like I said, I'm not in the pharmaceutical, pharmaceutical business, I'm not a doctor or anything like that we tell our story, our family story and stuff of what we've been through as far as with the Xamadosis, and then give some information, provide information out there, like we talked about resources that people, if they're in Seattle or whatever they got places, they can call, get more information, and then on that you'll see all my contact information. Or you go on, then on that you'll see. You know all my contact information. You go on the website, you know info it'll come right directly to us and all because we work directly. You know, with our website and our goal, our whole goal and objective is not, you know, some people take maybe something and use it to exploit, create a name, maybe make some money off of it. No, you know what we're doing is doing what we're supposed to be doing.

Speaker 2: 43:59

You know the other line that my mother used to say and then you hear it too. They said when you help others, you help yourself. And I just threw another H word in there. I said when you help others, you heal yourself. And that's part of my healing process too, because you know, once you get out there and you're talking to other folks and, as they say, there's people doing worst off. You know we went, I went to the um the rare disease thing back in february down in dc come to find out there's over 10 000 rare diseases out there. 50 are kids and then 30 of those kids don't make it to their five years old. So I'm thinking, you know, I've been very fortunate, I'll be 70 this year and all, but the thing is I've been very fortunate, so why wouldn't you give back and do things that you should be doing anyhow?

Speaker 1: 44:50

yeah, you're right, and and for that I thank you. I I am. You know. I asked you once before how do we meet? I don't know if it was, I don't know who it is.

Speaker 2: 44:59

No, you know how we met. No, you know how we met. I met. You know like I met most great people through LinkedIn.

Speaker 2: 45:10

That's what it was through LinkedIn. And then that's the same thing, other professional folks you know, the farming school doctors, people in general, just in business and I didn't come across some great people, man, that have great desires to make it, make a positive influx within our own community, health wise, and all too. That's been a good eye-opener for me, because now my eyes have changed somewhat, because there's a lot of great people out there who want to do the right thing. You might have a few out there who are doing the wrong thing, but dwell on the positive.

Speaker 1: 45:45

And I do want to say this, as we're closing out for today if you are watching this and, once again, you want to know where the free genetic testing is, please reach out to me. If you're watching this and you want to reach out to Art and you want, all right, maybe you have a. It's all about getting the information out there. Maybe you have a show or podcast or maybe you're doing something hybrid and sometimes not even hybrid. Maybe you're doing something in your city or your state where you're like you know what. We're looking for people, we're looking for patients to come out and add their voice. We want to know what's going on in the minds of a patient. I tell people this all the time. Just reach out, reach out to me. I can connect you with Art Once again. Like he said, he's all about helping. He wants to get the word out there and I do see where we have Ms Jacqueline Cox that commented great subject. This, you know it is. It's a great subject because we're helping people. We are putting the information out there that actually needs to be put out there. If you have any other comments or you want to once again get in touch with either one of us. Please reach out. Please just let us know.

Speaker 1: 47:04

I'm on LinkedIn. Art is on LinkedIn. You can find under Art. Still, sandra L, you can find under my profile. It's out there. I'm on LinkedIn. I'm on Facebook.

Speaker 1: 47:12

I just ask that you take this information and you become a part of the Each One, teach, one Reach, One community and Sadie McKenna. I'm not sure if you had a question or a comment, but I thank you so much for tuning in, because I do see that you're tuned in. So I thank you very much for tuning in to watch today, and hopefully you'll take this message with you. Remember, as I always say be kind. It doesn't cost you a thing. It's absolutely free for you to be kind. And when you be kind, guess what? You're going to make somebody's world. You're going to make somebody's day. You're going to make somebody's day. You're going to make somebody feel proud about themselves because you spoke to them, and not only did you speak to them, but you was kind to them. It costs nothing. If we can only be kind to one another, we can get past a lot of the stuff that comes our way.

Speaker 2: 48:09

All right, thank you, my guy you, my guy, hey, hey, hey, sandra, I owe you an organic cup of coffee and all, and, man, I love you, I love exactly what you're doing and all, and just keep up the fine fight and keep up the good work and tell our lc man to stand in the corner tonight likewise and tell miss elizabeth thank you so much for helping us get this started.

Speaker 1: 48:34

We had some issues at the beginning, but tell her I said thank you very much from the bottom of my heart. I appreciate you. I really do appreciate both of you. Continue to have a great day.

Speaker 2: 48:46

Okay, I appreciate you too. You have a great day too, then. Thank you Okay, see you Later.