Oh, and welcome to the Gifted Life Podcast, where we have conversations about Oregon, tissue, and eye donation. I'm Lori Steele. I'm Joey Boudreau. I'm Sally Centry.
And we appreciate you tuning in, listening in, lots happening on this episode of the Gifted Life. For example, we're going to talk about ECHO. Every community has an opportunity. You don't want to tune in.
And you'll also hear about minority outreach and national minority donor awareness week. And in the family support segment, we're going to answer the question or try to, why we blame ourselves, when many times you hear a family member asking, you know, why did this happen, or if I had only done this, or what if I had done something differently? So good to know. We'll also honor a hero as we do in every podcast, and we take your questions.
We pour a lot of our heart into each episode, because our main goal is to save lives through donation, to spread awareness, and you. You listening, you right there. You can help us. Subscribe in.
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She's got that number down, Joe. I love it. I love it. So much to get to here on The Get to Life.
Let's get started. On this episode of the podcast, we are so excited because we're bringing partners in. Our main goal is to make life happen, and we're going to tell you how we're doing that together. I want to bring in Lopez, director of Public Relations and Education, Kirsten Hines, who plays a big role in this podcast Behind the Scenes, but we're calling her up to the My Cake Kirsten.
Hey, Laurie. It's kind of nice to have a mic on for a change. I know. Well, we saw some of what you did at Transplant Games.
We love how you're so passionate about donation. And so it's only right that you're here. So Kirsten, you and I have made a new friend. We love her.
Her name's Amanda Halloel, and she has lots of titles. Amanda, how are you? Good. How are you guys?
Good. With Life Link of Georgia, their education specialist. She's also in Multicultural Donation Education there, and she's the Chet Chair for AMAT, which is the Association for Multicultural Affairs in Transplantation. So, Amanda, you're just busy.
Yeah, you know, but it's all circular. It's all circular. It's all squared on. And it's all this one goal, making life happen, which is what we do here in Louisiana.
We love to hear what other folks are doing as well. So Kirsten, we were talking about Echo, and that's what we want to Amanda to shed some light on, right? Yes. Amanda, I know that this is kind of a new initiative for AMAT and Donate Life America.
I believe this is the second year, correct? Correct. Correct. So tell us about Echo.
The community has an opportunity, so it's one of those awesome little acronyms that actually have been action. Last year, we went more of a social media aspect, which is we wanted to make it more inclusive that everyone can share a story about donation, and everyone can encourage everyone about registering to be organized. It's your donors. So last year, we shared hopeful stories.
We did social media hashtags, and then a lot of us who were out in the field, we did some really cool things where you, there was a speech bubble that said, I'm a donor, Echo me, so people would cut that out and take pictures with it, and then you would post it, kind of like how they do that Instagram frame now on social media. Well, after it was very much more of like an awareness campaign and getting people really engaged with what we were trying to create there for our first year out. So what's new for this year? So there are a lot of great things that are new this year, which we're excited about, but the best one is that we're offering a video contest.
So when you go to donatelife.net, slash, slash, ebbot, there is some information on there about how you can enter a video about what your story is about donation, and then we all judge it, and you're able to qualify for a prize from donate life America, which they have great like Tatsuki though. And we all like that. We like to go with that. One of the main things that I saw was re-eneration and repetition seems to be working, and that's kind of what we're pushing in this campaign.
Correct. What's about this campaign? We and the OPO and the donation community, April is donate life month, and we just go so hard for that month that then there's this little wall that happens over the summer. So with Echo being activated, it was really cool to get those people engaged.
You can go out to summer camps. You can do so many great things with this initiative and just get really people talking about it and echoing you about the positive message about donation. I like that. Every community has opportunity.
I love that. Echo. All right, so pay more attention for that. Hey, we have some stars here in Louisiana.
These videos you're talking about. We've already started doing that, so that's great. I'm going to prize Amanda. We'll talk about that.
So what else is going on? There's an anniversary. 20th anniversary you were talking about as well. Yeah, so under Mona Taffen's tail out of the Detroit, AMA has been extremely graphic, so we have a great new partnership with DLA and Echo.
We have a long standing partnership with National Motep for National Minority Donor Awareness Week. And what's bigger about it this year is that it's the 20th anniversary. So in 1996, it started under Dr. Quad calendar National Motep with HRSA as a one day event for National Minority Donor Awareness Day.
And here we are 20 years later, still doing our regional communities and celebrating those experiences. It's a big year for just for this topic because you would say National Minority Donor Awareness Week is the predecessor to Echo. They started the conversation. Wow, 20 years.
And we know we push this to here in Louisiana. Everyone has the power to make a difference. And we love to see how different people do it. Different people, different talents, but all working towards that one goal.
And that's what you're seeing, right? Correct. And so this year, you know, Echo is more of the broader community at large. With National Minority Donor Awareness Week, we're going to create more of a state-based so people can see what it really means, right?
So, the news and all that stuff, it's in a lot of topics of race and color, but there's level to this. And there's a section, you know, the cross section, especially the transportation community, just because they're African-American, they can be African-American and Muslim, or they can be, you know, Baptist or Christian and all those good things. But what we're trying to say is, our tagline for this initiative is, all faiths believe in saving lives. And that's what we're really talking about.
So for the first week of August, through August, first through the 8th, we're really trying to push in a media kit. We're pushing a hashtag of NMDAW20. And we'll have a link, a specialized link that everyone can go through and we're sharing Donor Family Stories of the multicultural perspective, rather than the recipient side. So that's probably the biggest difference between the two initiatives and what's really more finite.
But we're also going to speak heavily about living donation. Because living donation is one of the more participatory transplantations for multicultural. Wow. I love it.
I love that you have the media kit ready to go. We want them to pick up on this story and to share. But remember, you have the power to share as well on Facebook, Twitter, Instagram. We want you to take what has been done and then to spread that in your community.
You have the power to make that difference. So, AMAT, the number one.org for more information. What else Amanda? I know you have lots.
AMAT, the number one.org is where they can find a lot of information. We talked about the video contest. We talked about what's coming up. What do you want people to know?
You can go to our website so you can download all your information about Echo and our website. We'll also have July 18th as our release date for National Minority Donor Awareness Week. So you'll get that information there. And then you'll also notice that it is our 24th annual conference and we're in New Jersey.
And we're super excited about this. It's September 27th through the 30th of this year. We have clinical, we have educational, we have marketing. I mean, there are so many different ways that you can get engaged in this conference and take some tools home.
If you're in the transplantation community, if you're just a volunteer or donor family or someone who's engaged, it's open to the public. So we really want people to get out there and get as much information as possible because everyone has that chance to be to get. Amanda, I can tell you from being a host state two years ago, we had a great time with the AMAT crew. We did the conference in New Orleans two years ago and it was phenomenal.
Good people. I think the thing that we love most about is that in the last two years we've added the clinical guide. So it's really cool to see like hospital development people, we aid on a transplant coordinators come in and talk and get engaged in education. You can never learn enough.
But it's always room to learn and grow. All right. Well, Amanda, you make it fun. Obviously you're a wealth of information.
We appreciate you taking the time in your busy schedule. But AMAT, the number one dot org, you can go and download information. She talked about that video contest. So donate life dot net backslash echo.
Get involved today. On this episode of the podcast, we are talking about National Minority Donor Awareness Week and to fill us in on what's happening. The stats behind us. Why this is so important.
We invited Brandia Hamsi to join us. She's the Public Affairs Coordinator with Life Link Foundation and she is out of Tampa. Hey, Brandi. Hi.
Thank you so much for having me today. Oh, well, we love when our partners join us. We know how busy you guys are and we just love what you're doing and we want to help spread the word. So this podcast is really the best way to do that.
And I want to start with what we have coming up. So National Minority Donor Awareness Week. Why, Miss Brandi? Is that so important this week?
Yes, definitely. Observe every year. The first week of August. It was originally a day.
And so now it's a whole week. So we're very, very excited about that. And it's very important as far as getting information out to the African-American population about organ and tissue donation because there's so many misconceptions. I remember even when I started my job here at Life Link, I was talking to my vice president.
I asked her, you know, why are you honing in specifically on African-Americans? And her response was, we are the ones who need donations the most, but we are the least likely to give. So when you think about that, it's like, okay, definitely you need to be able to educate individuals in this population. And also after you form that rapport and get them to trust you and understand the process.
That's very important. Then make that decision to save lives and share your decision with others. That's very important. So do you have any stats as far as waitlist for minorities and what it is that we're talking about because we can say it, but when we back it up with facts, I think more people listen.
Definitely, definitely on www.unos.org. That's the United Network for Organ Sharing. It reports that there are currently more than 120,000 Americans awaiting a transplant. And of that, 120,000, 58% are ethnic minorities.
Of that, 120,000, 30% are black. Last year, 6,903 people lost their lives waiting for a transplant. 48% of them were ethnic minorities and 25% of them were black. So it's very important.
This is my vice president said, we're not giving as far as black men America is concerned, we're not giving. And unfortunately, sometimes we're actually dying waiting for that like they even give that people can give after they're getting gone. And they can't use those organs anymore. So how we done any research as to why behind those numbers and then how are we trying to turn that around?
Most of the research, at least that I've done, has been informal because people are very vocal when you go out into the communities to talk about this topic. But talking about from a historical standpoint, this trust amongst the medical community as a whole is very great in the African American community and to date back to slavery times and experiments that were being done in the name of science. And probably the most cited occurrence was the Tuskegee syphilis study, which took place in Alabama. And it was conducted for 40 years.
I believe it was a study of 600. They started with 600 black men. Some of them who were infected with syphilis, some who weren't. And they were provided free medical exams, free meals, and burial insurance that they participated in this study.
But those individuals who were infected with syphilis, they did not receive penicillin after it was found to be effective to cure syphilis in its early stages. So people were dying and they had the cure and it was withheld. So that study is actually brought up a lot when I'm out and about something else that's discussed. And I don't know if this applies to the entire country or all ethnicities, but they're the thing in Southern Black households.
And again, I'm coming from Florida. I'm a Floridian born and raised here. And it's what goes on in our house stays in our house. And unfortunately that secretive behavior is also causing people to lose their lives because they're not seeing individuals who look just like them who benefit.
Or who family members have donated their organs of their loved ones. So if you don't see that, if you don't hear about that, if you don't talk about that at the dinner tables, then these myths about doctors are going to let you die. Or they're definitely not going to use organs of African Americans to help other African Americans. There will only be the white majority.
When you hear things like that from people who you trust and who you love, it's very hard to combat that with the facts from a stranger. Even though you may have the same skin tone, you're still a stranger. So again, that's why it's important to build those relationships first, in my opinion, back it up with research. And even just from a realistic approach, I signed up because when I was young, my mom taught me the importance of getting back.
We volunteered all the time. And this is just another form of giving back. You're dead and gone. There's nothing else that can be done to help save your life.
So why not help someone else who's in need? Absolutely, Brandi. And this is Joey. And we have, of course, some of the similar challenges here in Louisiana.
And I was wondering, so what are you guys and what can we do to dispel some of these myths that, of course, are so deeply rooted from a mistrust and everything that you mentioned for such a long time? Hey, Joey, definitely, I think with probably all of the programs in the United States utilizing your volunteers, those personal stories, those experiences trump from what I've seen at least the facts and the statistics and all the research that you can present to individuals. Once they see someone who's life was saved because of an organ donor, then usually that's when the light bulb comes on and they want to learn more and hear more about their story. So definitely volunteer sharing their personal stories, their experiences has helped a lot in our area.
Also, definitely if there are any black news outlets in your area taking out advertisements and filling those advertisements with people who look like the readers of that publication. So they'll know, oh, well, maybe I've seen this person in the grocery store, you know, or what have you, and they received a transplant? I didn't know that. Encourage in going out to the faith communities historically, churches, faith communities have definitely been the cornerstone in African American communities.
So talking to these faith leaders and asking them for permission to talk to their congregations, possibly have health there at their houses of worship, having materials in their bulletins that they give out every week, and also being a constant presence because hearing that message one time, people can say, oh, okay, that's interesting and let it go. But when you hear it several times, then definitely it begins to stick. I think Joy, it's worked here in our service area in life link, just building those connections. Also, working with organizations that have already been established.
So we do a lot of work with predominantly black fraternities and sororities. And in the black community, so fraternities and sororities, we always associate that with something that's done in college. But they are very strong graduate chapters for these predominantly black fraternities and sororities, and they do a whole lot of work in their communities even after they graduate from college. So definitely getting in with them, they already have an established following, people who trust them, get that message into them, and they'll be really great advocates, I found.
Awesome. And what I like is that you're here sharing what you have happening there in Tampa and what you see across the country. And that's what we want to do is share these ideas, share these thoughts. We're trying some of that out here in Louisiana as well.
But tell us about these webinars and things that anybody who's listening can tune in and they can pick up more about what you've been talking about. Oh, definitely. I'm also a member of the Association for Multicultural Affairs in Transplantation, A.M.A. for short.
And the website is www.amat.org. And there are actually several work groups listed on that website for African Americans, Asian Pacific Islanders, Native Americans, Hispanic, Latin, and Hispanic. And anyone who's interested in learning how to get the message of organ and tissue donation out into their communities is welcome to join any of those work groups. They can go on that website, www.amat.org.
Click on the work group that they're interested in learning more about what they do and what they're offering the communities and find out who the chair is. Then that person, a quick email asking for information, date, time of their meetings. I guarantee you, we would love to have anyone, even if you're not a member of AMAT participate in that work group because we feel like everyone has something to offer. Also, definitely don't want people to get turned off.
Sometimes if you hear, Oh, well, that's the African American work group. I can't join because I'm not African American. We have a very diverse work group and everything that everyone is doing is about saving lives. It doesn't matter a person's ethnicity.
We welcome everyone to join. But there are several webinars that all of the work groups have presented. I know the Asian Pacific Islander, they recently did one that was amazing. I'm just talking about Buddhism and their belief system, Hinduism and their belief system and also the challenges that are faced with going into these belief systems and talking about organ and tissue donation.
But again, go on that website, www.amat.org. All of our webinars, the slides, it's found on that website. And Brandy, I just want to share with you and those that are listening, there's truth in what you speak, especially using volunteers and those personal stories. You know, you said National Minority Donor Awareness Week, it was one day then expanded into a week.
When Louisiana, we kick off a little bit earlier because we have Essence Fest and that's the party with the purpose. You've heard you're going to have to come down a way to celebrate and it's from a magazine aimed primarily towards African American women. But if you're from Louisiana, you'll know Essence Fest, but we have a lot of our volunteers coming out. We have law enforcement officers.
We have folks who attended the transplant games all there telling their stories. And we have folks registering every year, hundreds because they were able to have a face-to-face here personal stories about donations. So you're right, one person can make a difference. And we appreciate you joining us today.
Army guests with some information. That's what's all about, partnering and saving lives. We have reached the family service segment of the Get to Life podcast, guys. And Sally, so often we hear from families, they ask why.
Why did this happen? You know, if I would have only done this and it says though they're really blaming themselves for their loved ones death. That's right, Joey. And many times the why comes after we talked about suicide.
Many times people will just ask that question, how could this happen? Why did it happen? I don't understand. I miss something here.
But you know, we also in addition to that, we may question the what-ifs surrounding the death. But these are all questions that are usually associated with feelings of guilt, if only or what if I had done something. And according to Marie Mott literature, these feelings are usually associated with unfinished business with the deceased. In general, or the perception that one could have done things differently, when the bottom line comes down to there's really many times nothing that anyone could have done to change the circumstances of what's happened.
But you know, sometimes as I'm sure you're aware that we say things that do things that hurt one another unintentionally. Many times we do and say things we later regret. And these past conversations are revisited when our loved ones dies, whether it's real or imagined. And you know, we'd like to forget our words along with actions and we'd really like to take them back.
But unfortunately what we've done in said in the past can no longer be taken back. And often we feel helpless because with our guilt there's little we can do or say to correct the situation. And to correct it, you'd have to have that direct personal relationship with the person. But here she is no longer here.
But we can still ask forgiveness from someone who has died. And one of the techniques that therapists use is called the empty chair. And you'd be amazed at how that can really help people come to terms with the death of their loved one. And you know, many people ask just an empty chair.
What can that really mean? But you know, you get that opportunity to vision that loved one sitting there and saying, you know, here's what I wish I would have said. And here's what I wish I would have done. And I want you to forgive me.
That can be really powerful because it's really the words that count. And it's the thought that someone puts into it. So I missed the piece on the empty chair. Can you elaborate on that a little bit more?
Certainly. And what happens is the person visualizes their loved ones sitting in the chair and express what she wishes that she had said, not said, had done to the particular individual. And even though there's no response, it's the asking that's important. Many things that happen within ourselves when we go through this particular situation is just talking through it.
And that really right there makes a major difference for almost everyone that I know. But some helpful suggestions might be if you feel guilty, it's important to be truthful about what your feelings are. And there you go again, talking to someone that you can trust, someone that will not judge you or blame you because you're doing a lot of this to yourself. And you just need a bystander, if you will, that's willing to hear what you have to say.
And you know, you got to keep in mind, you know, we're all human. We all make mistakes. We all do and say things we later wish we had not said or done. But again, that's just part of who we are.
And I think that there's really that none of us can be perfect. And there's really no answer to these whys or what ifs or, you know, if only I had done that. I think it's really tormenting ourselves to go through it. So if it's something that you really feel that you can use some additional help with, then reach out to someone, reach out to a close friend, reach out to a professional that could help you get through this.
And if guilt is hindering your recovery, then go ahead, face up to it and spend some time with someone who can help you realize the outcome could be much more positive for you. That's good. It's tough. I keep going back to it.
Remember, you're human and no one is perfect. You have to put that to heart, right? Absolutely. All right.
Thanks, Sally. You have something that you want Sally to touch on. You want her to explore a topic more info at loca.org. It's a learning experience.
As we do in every gifted life podcast, we like to honor a hero. And in today's episode, we'll be honoring Wayne Gomez. So here's his story. Stole by the family.
March 2002, Wayne, our little Wayne, as they called him Gomez, lost his life at 16 years old. And the parents were devastated with what they were now facing, saying goodbye to their precious son. The question of organ donation was brought up, direct donation of his liver because a relative named James had been diagnosed with hepatitis C and was waiting on a liver. He was on the liver transplant waiting list.
So James life was saved thanks to little Wayne. Little Wayne's parents and two sisters expressed that they wanted to share his story in hopes to somehow reach others and help families deal with loss. Organ donation is an extraordinary gift that is a true miracle if they tell us. Wayne's mom says somehow, just knowing that a part of our loved one still survives within another is somewhat of a comfort.
At least it is to me. Now you can see pictures. You can read more about this story, loba.org on our heroes page, and you can learn about other heroes as well. Thank you, Wayne, for the gift of life.
And our question and answer segment. The question coming in today is does organ and tissue donation cause any disfigurement to the donor? Well, Lori, the organ recovery and tissue recovery is a sterile procedure wherein the body remains intact totally. So if one wanted to still have an open casket funeral, they would still be able to do so.
All right, good question. Good answer. You have more for us. You want to learn more info at loba.org or call us at 5046483477.
It's just that easy. Another episode of the gifted life in the books. Yeah, Lori, we definitely want to give a special thanks to Kirsten Heintz. Our own Kirsten Heintz.
Yay! And Amanda Hollowell as well as Brandi Ajanci with AEMAT and talking about which is Association of Multicultural Affairs. All great, yeah. And talking about the ECHO campaign as well as the National Minority Donor Awareness Week.
A lot of efforts going on. Excellent information. Yeah, it was. It was power packed.
Everybody working together to make life happen. I love. When that happens, and we want you to join with us, you can. It's very simple.
Info at loba.org 504648 Sally. 34777. Yes, now we got this hotline. We want you to join with us.
We want you to help us make life happen. Go out today. Do something you don't normally do to make life happen. Have a great one.