Heart to Heart with Anna

Enriching Lives with CHD Support Networks and Healing Stories

January 30, 2024 Anna Jaworski Season 19 Episode 434
Enriching Lives with CHD Support Networks and Healing Stories
Heart to Heart with Anna
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Heart to Heart with Anna
Enriching Lives with CHD Support Networks and Healing Stories
Jan 30, 2024 Season 19 Episode 434
Anna Jaworski

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Embark with us as we illuminate the enduring pulse of Hearts Unite the Globe, the non-profit championing an array of deeply impactful podcasts. From the heartfelt dialogues of Heart to Heart with Anna to the comforting echoes of Bereaved but Still Me, we're uniting voices across the congenital heart disease (CHD) community. Our mission extends beyond conversation; it's a call to empower, educate, and enrich the lives entwined with CHD and bereavement. We're unveiling exciting tweaks to our website, orchestrated by the talented Lauren England, that streamline your access to our treasure trove of resources and introduce a town hall-style podcast format that embraces the shared experiences of our listeners.

The journey continues as we traverse the landscape of loss and healing, led by the poignant narratives from Michael Liben's Bereaved But Still Me to the hope-infused Everyday Miracles. As executive producer, I wear my pride on my sleeve for the platform we've created that fosters profound conversations on life's toughest trials. Dive into the compassionate offerings on the HUG website, where support groups, therapy options, and unique programs like bravery beads await to guide individuals at every step of their heart journey. Discover the myriad of voices represented in our podcasts, including the wisdom of those who've walked the path of grief, and let them be your beacon of light in the darker moments.

As the episode draws to a close, we raise the banner for the unwavering support these families need, recognizing the vital role of organizations like the Adult Congenital Heart Association and the Cardiac Neurodevelopmental Outcome Collaborative. The heart's resilience is mirrored in the community itself, where heart-related camps offer solace and solidarity. Your support is the lifeline for our mission, and we invite you to contribute in any way you can—financially, as a volunteer, or simply by sharing our cause. Together, let's forge ahead towards the momentous goal of hiring an executive director, and continue to extend our hand to more families navigating through the world of CHD.

Visit the HUG website here: https://www.heartsunitetheglobe.com

Another way you can help financially is to subscribe via Buzzsprout here: https://www.buzzsprout.com/62761/supporters/new

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

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Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Show Notes Transcript Chapter Markers

Send us a Text Message.

Embark with us as we illuminate the enduring pulse of Hearts Unite the Globe, the non-profit championing an array of deeply impactful podcasts. From the heartfelt dialogues of Heart to Heart with Anna to the comforting echoes of Bereaved but Still Me, we're uniting voices across the congenital heart disease (CHD) community. Our mission extends beyond conversation; it's a call to empower, educate, and enrich the lives entwined with CHD and bereavement. We're unveiling exciting tweaks to our website, orchestrated by the talented Lauren England, that streamline your access to our treasure trove of resources and introduce a town hall-style podcast format that embraces the shared experiences of our listeners.

The journey continues as we traverse the landscape of loss and healing, led by the poignant narratives from Michael Liben's Bereaved But Still Me to the hope-infused Everyday Miracles. As executive producer, I wear my pride on my sleeve for the platform we've created that fosters profound conversations on life's toughest trials. Dive into the compassionate offerings on the HUG website, where support groups, therapy options, and unique programs like bravery beads await to guide individuals at every step of their heart journey. Discover the myriad of voices represented in our podcasts, including the wisdom of those who've walked the path of grief, and let them be your beacon of light in the darker moments.

As the episode draws to a close, we raise the banner for the unwavering support these families need, recognizing the vital role of organizations like the Adult Congenital Heart Association and the Cardiac Neurodevelopmental Outcome Collaborative. The heart's resilience is mirrored in the community itself, where heart-related camps offer solace and solidarity. Your support is the lifeline for our mission, and we invite you to contribute in any way you can—financially, as a volunteer, or simply by sharing our cause. Together, let's forge ahead towards the momentous goal of hiring an executive director, and continue to extend our hand to more families navigating through the world of CHD.

Visit the HUG website here: https://www.heartsunitetheglobe.com

Another way you can help financially is to subscribe via Buzzsprout here: https://www.buzzsprout.com/62761/supporters/new

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Speaker 1:

Greetings to all my Heart to Heart with Anna listeners. If you are new to Heart to Heart with Anna, welcome. I'm happy to have you here, and if you're a long time listener, welcome back. I hope you learned something new today.

Speaker 1:

I have decided to do something a little different this week and that is to tell you about some behind the scenes things going on with Heart Shunite the Globe. For those of you who don't know, heart Shunite the Globe is a nonprofit organization that funds not only Heart to Heart with Anna but also our bereavement podcast called Bereave but Stomy, our Spanish podcast called Guerrero's Decorazon and our newest podcast, the CHC Podcast, which stands for Congenital Heart Conversations. We are so excited to offer all of these different podcasts free of charge. We do have a Patreon program and we really appreciate it when people are patrons and we have some special behind the scenes information or special clips that we send out to our patrons. But most of our patrons donate just because they understand how important it is to have all of this information free of charge at a time that is usually very traumatic. Even though we provide this free, of course it's not free. It costs money for web hosting. It costs money to do this sound engineering. It comes to do all of the different things that are associated with the podcast and with the website, and I thought that you all might want to know some of the special things that we have available on our website.

Speaker 1:

Lauren Inglend, who is a Congenital Heart patient, is our newest webmaster. For years, sue Deff, who is a Heart mom, was our webmaster and then for about 20 years, brenda Vignaroli has been our webmaster. She has been amazing. She's a Heart mom like me and like Sue. I feel so lucky to have worked with these ladies. Having Lauren Inglend was a breath of fresh air. She's very young, fair to us Heart moms, and she has a background in design and it really shows. She took our website to a whole new level and Brenda was thrilled as was I, of course with all of the different changes that we made to the website. So let's talk about it. I don't usually do video with my podcast, but I thought today would be a perfect opportunity to do some video.

Speaker 1:

If you go to heartshunitetheglobecom, you can see our website, and Lauren did a beautiful job of putting our mission statement right at the top, which, of course, is to empower, educate and enrich the lives of members of the Congenital Heart effect and bereaved communities. I'm so happy that she put that up there because it helps everybody to understand immediately what it is that hug does. So the probably most important thing that we do is give a voice to our communities, to the CHD and bereaved communities, and the biggest way we do this is through our podcast. So here you can see the different images for the podcast. If you click on any one of these, it will take you straight to that podcast page and there you can read even more information. And if you click on the icon, then you can actually go to the show and you can listen to it. So we have some quotes about what others are saying about it. And then, of course, you can go back to either of the other podcasts. You can always hit heartshunitetheglobe up in the upper left-hand corner and that will always take you back to the homepage, and it makes it a little bit easier to navigate. One of the things that Lauren did that I love when she revised the website was she put fewer tabs, and that makes it easier to navigate. So of course we have our homepage under podcasts. There are two different tabs and one of them is the HUD Media Channel.

Speaker 1:

We recognize that we are not the only people out there podcasting for the CHD community or the bereaved community, and we are thrilled about that. When we started 10 years ago, I was the only podcasting on a regular basis for the CHD community and there were not many podcasts for the bereaved community. We started bereaved but still me, eight years ago and Heart to Heart with Anna started 10 years ago. We have been around for a long time and we are just thrilled that we've been able to talk to so many different members of the CHD community. For those of you who are new, we talked to doctors, parents, patients, spouses, siblings, doctors like pharmacists and nutritionists. It's really been joyful for me to speak to so many different members and to learn so many different things about growing up with the congenital heart effect or supporting somebody who is living with the congenital heart effect.

Speaker 1:

The CHD podcast is our newest podcast. I wanted a podcast that would allow adults with congenital heart effects to share their stories more than one at a time. Heart to Heart with Anna is interview based and mostly I interview one person at a time. Every now and then I'll have a couple of people on the program, but it's really an intimate setting and I love that because I feel as though I get to know my guests a little bit better. But I wanted to have a platform that was more like a town hall meeting, and that's what the CHD podcast congenital heart conversations is. We actually have a panelist guest on almost all of our shows and what's really cool is the CHD podcast gives us an opportunity to meet the people behind the scenes.

Speaker 1:

Most of you don't know that there are volunteers that work for Heart-Shenectically me I am also a volunteer. We don't have any employees that work for HUD. Everyone that works with HUD is a volunteer. We do have a couple independent contractors that we hire jobs out to, but really for the most part we work on a volunteer basis because we all believe in the mission of what HUD is all about. So the CHD podcast has some amazing volunteers who help to be producers, who help to be hosts or co-hosts and, of course, who help to be guests. So the first segment of most of the shows is the panel discussion, and then we do have patrons people who donate to HUD and those people are invited to be part of the guest audience for the CHD podcast and they can ask the guest questions or they can share their own stories and the third part of the podcast. We actually bring the producers out from behind the scenes and we invite them to share their stories or to ask their questions and let us know what they thought of the podcast. This is unusual. It's something we've never done before. Not every single episode of the CHD podcast is the same, but most of them follow that format. It is a monthly podcast and I absolutely love it because with the CHD podcast we're able to share so many more stories. It gives us a wonderful platform.

Speaker 1:

If you clicked on the HUD media channel, what you'll see is an alphabetical listing of the podcast. We don't count the word that. That's why the CHD podcast is up at the top, and these are podcasts that are either for the congenital heart defect or the bereaved communities. You'll see as I scroll down that we have the bereaved podcast underneath this. What I love about this is that people who have been on Heart to Heart with Anna are people we know are doing podcasting for the CHD community. The chance to be on our page. So that kind of makes Hug a clearinghouse for podcasting with the CHD and a bereaved community. So you can see from the heart. The cast has stood by heart kids. These are some amazing people in Australia. They have been on Heart to Heart with Anna. They are completely delightful and I really encourage you to listen to their podcast. Garam Socorzón is in Spanish, so you'll see that the write-up is completely in Spanish. Don't ask me to do more than say the title because I'm sure I will butcher it. And the heart chamber is hosted by Boots Nighton. I absolutely love Boots. She came on my show, I went on her show. She is completely delightful and I really encourage you to listen to her podcast. She has some amazing stories on there.

Speaker 1:

Now, in addition to the podcast, we wanted to also put some other types of resources but, as a few who don't know, I am one of the founders of the Heart Community Collection. Jenny Muscatel, amy Emley and I started this. It is an opportunity to put together a community of writers and ambassadors to give us a platform where we could be a community, where we could support one another. Most of us are indie publishers or we have our books out, resources out with small publishers that don't have really big budgets to get the word out about our resources, and I thought if we all united. That would be a way that we could support each other. For readers, we can enjoy other books by other authors, because many of them are memoirs. I thought we do have some fiction out there. We do have some children's books. It's really a wide variety of resources and I love the fact that we've brought in other people who are trying to spread awareness through sounds of different items that can help to promote awareness of congenital heart disease. I can look it out. Perhaps my favorite thing of all with us coming together has been the development of the CHD magazine.

Speaker 1:

Jenny Muscatel is the editor of this magazine. Jenny, like Lauren, has an eye for design and she is amazing. She has put together the most beautiful magazine. Her husband says it looks as beautiful as vogue and it looks like something that you could pick up at the grocery store and just want to consume. It is not available at any stores. Jenny does not charge anything for it. It is a free resource, in fact. Let me click on this so you can see. It is absolutely gorgeous and she has been doing it for over a year now. I'm so proud of her. Here you can see the different magazine covers.

Speaker 1:

I cannot commend Jenny enough for what she has done. She has been wonderful Again, providing a platform for people to share their stories, their news and their information. Jenny has done a beautiful job of sharing very inspiring stories by people of all ages we have adults, we have parents and she does a beautiful job of editing Amy and Lee is one of her editors. I have helped out. Every now and then I have a column that she has been generous enough to let me do since the very beginning and ask Anna a column, and I love doing it. It is so much fun and it has just been such a wonderful way for us to again come together as a community, provide a platform for us to hear each other's stories and learn more about congenital heart disease and how we can come together as a community to promote awareness and to feel alone which those of you who have listened to her within you know.

Speaker 1:

That's my cataclysm. You are not alone because when you find out your child has a heart condition especially like my child was born with a critical congenital heart defect. Without surgery my child would have died it's traumatic and it's very easy to feel isolated. You see a magazine like this where you hear podcasts like the ones listed on the Hugg Media channel. You realize you're not alone and it helps you. You learn stories about other people's resilience and that can get you strength.

Speaker 1:

Another resource that we have under the podcast listing, which really, as you can see, it's not just podcasts, but it's all different kinds of resources it's the Heart Diplom's newsletter, and if you did not catch the interview I did with Lee Camping Carter, please go check it out. She is so articulate. I absolutely love Lee. She's done a fantastic job with a free newsletter. Like Jenny, she's putting out something free of charge. Now with Lee, it's on Substack. It's so easy. You just find up for it and it automatically comes into your mailbox. You don't have to go back and check for it, and she does in depth, wonderful interviews with adults with congenital heart disease and I have enjoyed every newsletter that I've read. I cannot commend her enough. She's fantastic. Of course, here's her term with Anna Now to help you, to podcast. If you haven't had a chance to listen to it, check it out. It's with Tommy Kat Hansen. They're the mother and father of Hardy, who was born in 2014 with congenital heart disease, and their podcast is so much fun to listen to. They have a very lively format for their podcast and I've enjoyed them on my show and I've really enjoyed being on their show as well.

Speaker 1:

No little hearts. I haven't had a chance to connect with these people but I found out that this is another CHD podcast so I went ahead and put them on the media channel because, like I said, we want this to be a clearinghouse for information so you don't have to hunt all over the internet. Any heart with Dr Robert Pass is amazing for the medical community, as listen to the public is at the sound. I am not a doctor or a nurse, so I've gleaned some information, but it's a bit over my head. But he has been lovely and came on my podcast to talk about why he started a podcast for doctors and he does an excellent job of helping people in the medical field to learn about the up-to-date research that's being done, and he actually gets to interview the researchers, which is outstanding. So if there's a particular topic you're interested in and you have more in-depth knowledge, you can probably listen to some of his episodes and get something right out of it.

Speaker 1:

Unbeatable is hosted by Margaret Ellis-Raymond, who is a heart warrior herself. It's not actually a podcast, it's a YouTube channel. If you haven't been out to YouTube to check it out, go check it out. She's adorable. She came on Heart to Heart with Anna and loved talking to her so much that I asked her if she would write for my book the Heart of a Heart Warrior, and she did. Her story is touching. She talks about mental health, which is something that we need to be addressing, and I'm so thankful to see the CHD community is addressing mental health issues with our heart warriors now that they realize how important that is. Margaret talks about all different aspects of living with congenital heart disease. Then there's Whole Hearted by Jenny Muscatel, the editor for the CHD magazine, and she has this lovely Christian radio show and she is amazing. Again, I cannot recommend Jenny enough. I think everything she does she does with a lovely sense of faith and service to others, and I wish I knew more people like Jenny, because she always makes me smile and I'm always thankful when she comes on my podcast or when she has me on any of her podcasts.

Speaker 1:

I'm not going to go over every single one of the podcasts for the Buried communities, but I do want you to know that we have this section as well, because sadly, we lose people in the heart community and it's heartbreaking and it really does help to know that you're not alone in that aspect as well. Buried but still may is hosted by Michael Liebing, and she is such a compassionate person. His daughter, liel, was born with a congenital heart defect. She passed away not for her heart defect but from epilepsy, from the grandma seizure, and it's so tragic to me that he lost Liel, but I'm so proud of him and Nancy Jensen, who's our producer. They have been able to use their grief as a vehicle to help others. To me that's just priceless. I'm so proud of the work that they have done that seven years of podcasting they've completed. We're going into our eighth year and I am just so pleased that I can be the executive producer for this podcast.

Speaker 1:

If you've had it, listened to it. We talk about so many different aspects of grief and loss that I'm sure there's an episode there that would be helpful to you. Kendra Bonati has been on their program for podcasting's Grief Gratitude in the Grand Between. Then there's the Grieving Moms by Megan Hill. She was completely delightful. She was also a guest on their program. Haven by Jen Burgard.

Speaker 1:

Again is about the loss of a child. Then there's Losing a Child, hosted by Marcy Larson, also known as Always Andie's Mom. She lost her son. She's a pediatrician and she has an amazing story to share. And then the Selfish Griever by Whitney Summerano. Again, she was a guest on Michael's program and just so articulate and has such an amazing story to share. I can't recommend her podcasting that Where's the Grief, hosted by Jordan Ferber. Jordan Ferber, in addition to being a brief sibling, he's a comedian and he knows a lot of people in the entertainment industry, so he gets to talk to some really interesting people. And if you haven't heard his podcast Where's the Grief, check it out. I think you will find something there to help others.

Speaker 1:

Now, this is not necessarily about grief, but this podcast Everyday Miracles podcast is hosted by a dear friend of mine, julie Heaton-Borg. Her podcast is about faith and miracles and angels all things that I find uplifting and I think others might also find it uplifting. And here's Jenny Mesquitele, again, this time with her husband, with the that's the Truth podcast. It's not a CHD podcast, it's not a bereavement podcast, but it's very entertaining. I think if you want a dose of happiness in your life or inspiration in your life, listening to that's the hashtag truth or listening to Everyday Miracles, it gets your day started off.

Speaker 1:

Right Now. I'd like to talk to you about another part of the Hague website and I know you could just go out here and look at all of this yourself, but I'm hoping that you're enjoying my little stories that are behind the scenes with the website and I'm hoping that maybe you're learning about some resources she didn't know existed. Brenda and Sue and Lauren and I have been working on this website. Sue Dumb and I started 27 years ago working together, and then Brenda picked up when Sue stopped working with me when her child became an adult and she went on to other pursuits. And just recently, lauren has been working with me. So the website has been through several iterations with different webmasters, and even each webmaster and I would make changes. I think that they would all agree that perhaps this is the most beautiful the website has ever looked, and I'm so proud of it.

Speaker 1:

We have so much information that just looking at the homepage, you may not realize everything that is there, so let me share some of the resources with you. If you go to the resource section, this was the section that gave Sue and Brenda and me the most trouble, because what we realized as heartmobbs was that we needed certain information at different times since we were raising our children. It was not always easy to find. When we would find certain resources, we would put them on the website. When Lauren agreed to be the webmaster, I said we have to do something better with the resources page, and I'm not as long as she has done so. What she has done with this website is she's made each of the different types of resources into something like a blog, so it actually uploads pretty fast. That's something that's really important. You don't want the website to lag. This does not because of the way she's done it.

Speaker 1:

So, on, different groups that Brenda and I came up with are represented here, but in a different way, so that all you have to do is click on whatever it is you're interested in. For example, say, you're interested in support groups and therapy treatment, you can click on here and then you can see the logos and the names of the different programs. And if you're interested in any of these, like Symposure in Canada while sick kids would be one that would be of interest to you, or the Canadian Cajunate Heart Alliance, if you're in the United States, christy's Heart Pugs might be one that you're interested in. Many of you have heard about the bravery beads program that are not just in Canada but also in the United States as well. There's a permission there about that. This was by heart. If you are an adult woman with a congenital heart defect, this is a support group that may be of interest to you this summer. The Heart Foundation is located in Scotland. This is such a great way of seeing at a glance these different support groups. Then, if you want some more information, like suppose you need a heart transplant, well, here's the link to who knows the United Network for Organ Sharing and you can read about them. Then you can actually find support with them. This will actually take you to their website, which gives you a lot more information.

Speaker 1:

We tried to keep it simple on the HUB website, where we would give you enough information that you would know where you can go for more information. I really love how Lauren organized this. The different categories we have are support groups in therapy, treatment, education and advocacy groups, scholarships, support, care packages and financial aid. So many people have needed a little bit of extra help and it's nice to know there are some organizations out there willing to provide some help for our heart community, and there are medical services, and by medical services, let's just hop into this one a little bit.

Speaker 1:

There's Brave Little Hearts SA SA stands for South Africa. The Mayo Clinic, mending Chains, the Mighty Oaks Foundation All of these different organizations, like the Ollie Hinkle Heart Foundation, provide all different kinds of services and I love that Lauren's done here. Under each one, she puts down the kinds of services they provide. So if you look at Brave Little Hearts, south Africa, they provide medical services, education and they have advocacy groups, mayo Clinic support groups and therapy treatments, education and advocacy groups, medical services, funding, research, housing and transportation, professional organizations and support for Brave families. So, going to that website, you'll get a ton more information. Thank you, lauren, did such a good job here. At a glance you can see the names of these organizations, what kind of help they provide. Like the Mighty Oaks Heart Foundation, they provide financial aid. I know that's something that's really important to a lot of the members of our heart community. The Ollie Hinkle Heart Foundation also provides support for their packages and financial aid. So instead of you having to have all over the internet, you can just come to this one page and see who is providing help.

Speaker 1:

Here's Oxygen to Go. How many of our community members are on Oxygen and they need it Sometimes? It's not always easy to get. That's one of the medical services that is on this page in our support section. Take Heart Association Project is actually in Africa and it's so nice to see that we actually have information here around the globe. That was one of the things that was so important to the Heart United Globe Board was that we actually do provide information around the globe. If we only had resources that were in the United States, we were thieving out an awful big part of the world. So we definitely are happy to look for information around the globe. Take Heart Association Project is located in Africa, of course, the Pakistan Children's Heart Foundation in Pakistan. If you have an organization that you think we should be listing, please let us know. Please send it to us and we'll look it over and we'll be happy to include it in our resource guide.

Speaker 1:

I've gotten over quite a few. I thought the medical services would be something that people would want to know a little bit more. I know that for a lot of us heart parents funding research is really important. We want to know who is out there on the research, what kind of research is going on? For a lot of the adult patients they want to know what research is going on as well and if there are any studies that possibly they can take part in. So we definitely love to have information about that. If you click on that page, you can see some of the different organizations that are funding research and you can see how you can get involved with that as well. We have some really amazing organizations. Now I cannot vouch for all of these organizations. I have had a lot of people from these organizations on my podcast to talk to us. I just wanted to provide a clearinghouse of information and I'd like to think that all of these are amazing organizations and what I have seen is people are really trying hard to do right by the CHD or bereaved communities.

Speaker 1:

Sometimes transportation can be a real issue and housing can be a real issue. It's expensive when your hospital is not in the same town you live in and you have to keep driving back and forth or you have to stay someplace. Unfortunately, in some cities in the United States, the Ronald McDonald houses only for families who have children with cancer. Sometimes they do provide housing for families on a slightly scale basis if they have a child with a CHD, but not always. There is a Fisher house that helps military families. I think most parents want to be there with their children and it's really hard when you can't be there for your children when they're in the hospital. So I'm really glad that we have boosted the number of resources that we have available on our website. If any of you have resources out there that you think we need to know about, please send them to us. Lauren and I will work to contact those nonprofits or hospitals or organizations and see if they really do offer support, and then we'll be happy to add them to our list. This is the last January show of 2024 and after this we'll have hard match.

Speaker 1:

So for many of us, education advocacy is a huge importance right now, and we spend all of Shed he Warrie doing what we can to promote awareness of congenital heart effects. Here are some organizations that deal with advocacy and education. So if you are looking for information especially if you're going to go on a podcast, you're going to go on a radio show or talk to the media A lot of these organizations will actually provide information that you can use to let people know this is the number one birth defect around the globe. It's amazing to me how we are in the year 2024 and there are still so many people who do not know that congenital heart defects are the number one birth defect. It's amazing to me how many people don't know that. So that education advocacy group section may be very helpful for a hard month.

Speaker 1:

Organizations that provide vacations are our wishings for a lot of our kids. Having something like a vacation or a wish to look forward to can make all the difference in the world in their recovery period. It gives them something to aspire to. It gives them something to be excited about. We've devoted a couple of episodes to a kid. Again I haven't talked to people from buying Vikings, but maybe I should. We've done an episode on Give Kids the World. Of course, make-a-wish is probably the most famous wish organization that's out there and Dr Brandeline Phillips came on my program and he talked about what his Make-A-Wish experience was like. And then the Oly Hinkle Heart Foundation. It's amazing to me If you look at all the different things Oly Hinkle Heart Foundation does. It's just staggering and very exciting to see all the different ways they are working to help families who are living with congenital heart disease. So, going back to our resources list, and we have professional organizations, conferences and retreats. I think this is really important.

Speaker 1:

I am always wanting to learn more. That's one of the reasons I do my conference is because it gives me a chance to do shows on advancements. I get to meet with doctors. I get to meet with parents and a lot of parents are very well educated on their child's heart condition, so when they come on they speak with great expertise about a particular condition. I love it. I love being able to hear all the different things they know and becoming a better advocate myself, not just for my child's heart condition, which is single and ventricle, but also lots of other heart conditions and maybe now there are at least 42 different congenital heart effects. That's a lot to know, especially if you're like me and you went to school to become a teacher and not a doctor or a nurse. There's a lot for me to learn and thanks for always changing. There's always more to learn. The adult congenital heart sensation is awesome in providing webinars. If you all haven't ever heard any of their webinars or gone to any of their conferences, highly recommend you do it. I have thoroughly enjoyed going to the ACHA conferences, meeting with professionals, meeting with other parents and patients with congenital heart disease. You can't go there and not be touched in so many different ways. It's a remarkable experience. It's something that will stay with you, and the people that you meet there become lifelong friends.

Speaker 1:

The cardiac neurodevelopmental outcome collaborative is something that we have needed for a long time. Maybe we didn't know we needed it because we were so focused on survival, but now we realize that these kids are surviving to adulthood and now we recognize that there's real connection between the brain and the heart. When the heart is put on bypass and when your heart's been cut off multiple times and you've been on paralyzing drugs, your brain is going to be affected by that. But what exactly does that mean? This cardiac neurodevelopmental outcome collaborative is indicating that and they're trying to find out what we can do to have the best outcome for our kiddos with SNHDs. And there's Hayden's heart, mendelmuller heart, hayden's house of healing and there's Oli Hanckler's heart foundation again. So I really loved how we do have a variety of conferences and retreats, and I know there's more than this, but this is what we have on the page right now. If you have a conference or you have a retreat that you want me to know about, please send it to me.

Speaker 1:

When we come back, we will talk about support for bereaved families. Okay, love, you've stuck with me this long. First of all, thank you. I hope you are finding that there are so many resources out there for parents of children with congenital heart defects and for our beliefs community that maybe you didn't know we're out there. I hope you're seeing what expression throws we have on our United Globe website and what great job Lauren England has done in putting this all together.

Speaker 1:

It was really important to me to have a whole section on support for bereaved families. I feel that this is something that needs attention. Way back 27 years ago, it was most of parents who were out there looking for information and, sadly, when a parent would lose a child, they no longer felt like they said in, the chats were hard for them to go to. They told me it was difficult to hear parents asking questions about going to school or dealing with bullying or some of those other issues which they knew were important issues that their children were never going to deal with because their children had died. I'm delighted to see that now those people have so many more resources, like at all the different resources that are available for families who have lost a child.

Speaker 1:

For those of you who are not looking, my podcast is featured on YouTube. I did have my own YouTube channel. We just read some of these resources to you. There's three helpful hearts. There's Camp Braveheart, there's Ellis Umbrella, fiona's Hope, we've Doc Hayden's Precious Healing Hospice Foundation of America, the HSC Pervement Network, living Waters Ministry, mayo Clinic and then, of course, allie Henkelhardt Foundation. So we have a lot more available for families than we used to have and I'm happy to see that from my bereaved friends and let's face it, folks, many of us are bereaved I have not lost my child, but so many of my friends have lost children and those children became an important part of my life and I have definitely gone through grief and feeling a sense of loss every single time a friend of mine loses a child.

Speaker 1:

It's part of all of us and I have had to go to grief counseling and I'm not embarrassed to say that. I think it's healthy to recognize when you're grieving, to recognize when you're suffering loss yourself, even if it's not your child. This community is a tight knit community and it's okay for us to admit that we're sad. It's okay for us to feel that we maybe need a little bit of extra help because we are grieving, and I think it's through getting some help, getting some counseling, that we can learn to move forward with our grief. We don't leave those people behind. They come forward with us. But when we learn how to do it in a healthy way, we learn how to smile again, we enjoy the memories we have of those we've lost, and I think we can have a better impact on the world.

Speaker 1:

So the last resource that I want to look at on my website is about camps, and what's so cool about this is that over 20 years ago, when I was first finding resources with Sue Dove, there were only a handful of camps, and the number of camps has increased. Sadly, it also decreased when COVID hit, but a lot of them are coming back, which is really exciting. And what I love is that some of these camps are not just summer camps. Some of these camps provide camps for not just the first kid but the siblings as well and the parents, and there's a whole family affair, which I think is really awesome. So there's Camp Braveheart, which is in Canada, camp Decorazon, which is in California, camp Holiday Trails. Don't ask me where all of these are, but some of these are very familiar with. Welcome to Camp Rhythm it's right here. Cincinnati Children's, of course, in Ohio, living Waters Ministry, the Madden Open Hearts Camp, roundup River Ranch and the Taylor Family Foundation that's when it does the whole family. Then there's True Friends and Victory Junction and Zeta Crossings, which I think is a really fun name. I used to have more when Brenda and Sue and I were in charge of the camps. We had even more listed, but sadly, when Lauren and I were checking out some of those camps, some of them had closed since COVID and had not reopened.

Speaker 1:

So the last thing that I want to talk to you about is how you can get involved with Heart United Globe if you're interested. We do not pay our executive director, who is me. I do not get paid for working with HUD and I'm a lot bit worried about that, friends, because I turned 60 last year, I'll be 61 this year and I'm not going to lose forever, but I would love to think that the resources that we provide, the platforms we give members of the CHD and Barrage communities, won't go away when I die and if we don't start working to save money so that we can pay an executive director, I have a feeling when I die, so will HUD. So if you would like to donate to HUD so that we can start letting aside money for hiring an executive director, then please do. There are so many different ways.

Speaker 1:

You can donate. Through Venmo, you can become a patron with our Patreon program, even just doing online shopping with IG, if you select or unite the globe through IG, we get a little kickback from that. It's not a whole lot and it doesn't cost you anything. It would be a way that you could give to HUD that wouldn't cost you a thing. And if your Patreon program starts with this look, it was $2 a month. You cannot even buy a couple of coffee for $2 anymore. It's crazy, but $2 a month. If all of our listeners would give $2 a month, we would be able to start saving enough money that within a couple of years we would have an estate that we could use.

Speaker 1:

To start paying somebody to work with this, nonprofit grants and do some of the things that I can't do. While I'm running for podcasts and the website and doing as much as I am doing, we would love to hire an executive director and actually pay them something. Our friends level is just $2 a month. The supporters level is five, advocates is 10 and defenders is 25. When you're a patron, that gives you the right to come onto CHC podcast when we are doing recordings and you can be part of the audience that asks questions and takes part in our recordings. We'd love for you to do that. When we do have extra little bits that we can't put into step and step because we don't want it to be too long, we will share those with our patrons and that's something I'd like to do more at. But I'm only one person and we're trying to keep the expenses down as much as possible.

Speaker 1:

I don't have many people who help with sound engineering. Michael Lieben and I do most of the sound engineering and then for the Spanish podcast that's mostly Belen Lantan and Martin Lantero. It's tough for us to do extra stuff when we're trying to keep regular material going out there. So for those of you who would like to get back by actually helping, we do training. We expect people to come and know we want to do. We train you and if a little Texan grandma like me can learn how to sound, engineer a show and learn how to run a podcast. I can teach anybody else how to do it too. There are a lot of steps that are involved, but it's something that you can be trained to do and we provide that training.

Speaker 1:

We do have volunteer surveys. You can reach out to us on Facebook. We have a contact us page right here that you can just fill out and we'll get your message. We're always looking for people to help. I have amazing volunteers that I work with. I love working with the volunteers and it's fun to have fresh people come in with fresh ideas and give us their experiences to help us help others. And that's really when it's all about with. It's all about us providing that information to empower, to educate in the rich lives of members that the general heart defect and breach communities.

Speaker 1:

The CCC podcast meets for three hours a week on Sundays. I'm so excited to start with Anna. I meet when my volunteers are available to meet, but the Spanish podcast is getting ready to set up a new date and time for meeting and I'll put some information about that on our face growth page when we have all of that set up Arrived. But still, me meets from 1 to 4 pm Central time on Thursdays. So if you're interested in helping with our bereaved podcasts, we're always looking for producers and people to help with social media, people to help with editing transcripts so that our non-native English speakers or our hard of hearing community members have access to the podcast. That's another way to reach people all around the globe. Some people can read English better than they can understand it, especially when you have people with different accents.

Speaker 1:

But if you want to get back in some way and you can't afford to do it financially, you can help In so many other ways. Monica Masi has helped me in the past with administrative services, such as keeping up with spreadsheets and helping me with data collection. That's always helpful. We like to keep stats on our podcast to see what shows are doing well so we know what other shows we should have in the future, because that's what people want to listen to and Monica has helped me with that in the past. I'm always looking for people who are willing to do administrative stuff, because there's a lot to be done when you're monitoring for different podcasts and we'd like to grow.

Speaker 1:

One of our volunteers for Marie Butte Tell Me, who has also been a guest multiple times on Heart to Heart with Anna is Jackie Renfrow. Her family is dealing with lung QT syndrome and she has it on her part to start a podcast specifically for families dealing with lung QT syndrome. We would love to do that, but we really can't get that off the ground until we have a dedicated team. So if you have dealt with lung QT syndrome or you want to learn more about that and you would like to be part of Jackie's team, reach out to us and let us know. That's it for today.

Speaker 1:

It's all about the heartsharkglowcom website and what wonderful resources we have available for you. I hope that you will find some of these resources helpful as you go forward in Heart Month, and I hope you'll do your best to be an advocate and an ambassador for the CHD community, spread awareness and help people to find resources that can improve their quality of life. I don't think there's any greater joy that you can get in life than when you know you have been there for somebody during their deepest, darkest hour. You can do that and it won't even cost you a penny just by being an ambassador, just by letting people know about resources that could make a huge difference in their lives. So thank you to all the different nonprofits and hospitals and agencies that are providing resources.

Speaker 1:

Thanks for corresponding with Lauren and me, as we've been writing to you and letting you know. We have your resource on our page. Please put our resource on your page. It's been really lovely to see the spirit of generosity and reciprocity that has got into building this page and making everything fresh and new. Thanks again to Lauren Ingram for hours and hours and hours of hard work to make this website look beautiful, and thanks again to Brenda Vignaroli and to Sudha for being my webmaster in years past. Without new ladies, I would not be where it is today. I can honestly say that I love you all. Thanks to all of you who have made a difference in the heart community and in the bereaved communities. Thanks for listening today and remember my friends, you are not a mine.

Heart to Heart with Anna Jan. 30, 2024
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