Uniting Communities for Better Heart Care Outcomes with Kate Doherty-Schmeck

After facing the heart-wrenching loss of a beloved family matriarch to a once-benign heart condition, I am reminded of the fragile nature of life and the critical importance of heart health. Join me as we explore these deeply personal connections to heart disease and the heartfelt stories of families who navigate these challenges with resilience and love. This episode kicks off with a touching account of a family who urged me to share their loss hoping it might help another family living with a chronic, untreated heart condition to maintain consistent monitoring, and the efforts of "And Mama Too: a Dash of Love," a non-profit dedicated to supporting postpartum heart and NICU moms.

During this episode, you'll meet the inspiring Kate Doherty-Schmeck, Executive Director of Global ARCH, who shares her dedication to transforming outcomes for childhood-onset heart diseases. Kate's insights into the power of global collaboration underscore the immense impact of organizations advocating for improved healthcare access. From the emotional encounter in a Guatemalan hospital to powerful events in Barcelona and Washington, D.C., discover how communities are coming together to fight disparities and ensure that every child receives the care they deserve.

As the episode unfolds, I offer encouragement and resources for those touched by congenital heart disease. Whether it's through volunteering with Global ARCH or becoming an empowered advocate, there are myriad ways to contribute to this vital cause. More than just stories, these narratives serve as a clarion call for action, reminding us all of the strength found in community and the enduring spirit of advocacy. Remember to tune in every Tuesday for new episodes filled with heartwarming stories and invaluable insights.

Global ARCH link: https://global-arch.org/
&Mamatoo: A Dash of Love: https://www.andmamatoo.com/home

Chapters

• 0:00 Personal Connections in Heart Health
• 0:24 A Cautionary Tale
• 2:05 News
• 8:24 Family Heart Health Connections
• 15:49 Global Arch Impact on Patient Outcomes
• 22:28 Empowering Patients Through Global Collaboration
• 33:12 Inspiring Advocacy in Heart Health

Transcript

Kate Doherty-Schmeck: [00:00:00] ...my connection, to congenital heart disease is very personal with multiple family members who are impacted by congenital heart disease, including my brother and my husband's grandmother... 

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. I'm also a heart mom to an adult who was born with a single ventricle heart and is 30 years old. That's the reason I'm the host of your program. 

A Cautionary Tale

Anna Jaworski: Today, I want to share a story that's weighing heavily on my heart. It's about a remarkable family that I've befriended through Facebook. This family has adopted multiple children with various chronic illnesses, including congenital heart defects, cancer and amputations. Over the years, I've grown close to many family members sharing in their joys and sorrows as if they were my own relatives. Recently I learned of a devastating loss. The mother of this family passed away. 

Anna Jaworski: She was an [00:01:00] extraordinary woman, a brilliant scientist researcher and doctor who gave children with cancer a second chance at life. 

Anna Jaworski: Tragically her right branch bundle block went from benign to lethal without anyone knowing it was about to happen. Her sudden cardiac arrest awoke a need in me to remind people with benign heart conditions to continue to have them monitored on a regular basis. My friend's untreated condition meant that her sudden cardiac arrest left no hope for survival.

Anna Jaworski: My heart aches for the family and the world that has lost this amazing woman. While, I regret never meeting her in person. I'm grateful for the connection we shared. Her memory will live on through the lives she touched and the children she saved. As we mourn her loss. Let's remember her gifts, talents, and contributions to society. May her legacy inspire us all to make a difference in the lives of others, [00:02:00] just as she did. Rest in peace, Ri. 

News

Anna Jaworski: Now for the news. I want to share a nonprofit with you that I've recently been introduced to known as, andmamatoo: a Dash of Love. This organization is dedicated to caring for postpartum heart moms and, N-I-C-U, moms are NICU moms, through their handcrafted, all-natural care packages. 

Anna Jaworski: The organization was inspired by a heart mom, Christina and her second son Dashel. Dash was born with an undiagnosed heart defect and had two open-heart surgeries in his first three months of life. Christina with her mother, Catherine and her sister Juliana by her side, left the hospital on a mission to send every heart and NICU mom, a dash of love. You [00:03:00] can purchase a basket for an expecting mom for the perfect baby shower gift. They also have breast milk jewelry for sale and all proceeds, go directly back into the organization to support heart and NICU moms. Join their mission on Facebook, Instagram, or at their website www.andmamatoo.com. 

Anna Jaworski: Yes, you heard right. Breastmilk jewelry. I thought that had to be a mistake. So I had to go to their website to check it out. As a former breastfeeding mom, I never would have thought that anyone could do something with my breast milk other than feed another baby. Boy! Was I wrong! 

Anna Jaworski: Honestly friends, you have to visit their beautiful website to see the creative things they're doing to help heart and NICU moms feel loved and pampered. 

Anna Jaworski: After this short break, we'll have an interview with another amazing mom, executive director, loving sister to a heart brother, and a loving granddaughter-in-law to another heart [00:04:00] warrior. 

Anna Jaworski: From learning about Ri and her supposedly benign condition to hearing about Christina and how her son Dash's undiagnosed heart condition led her to start a nonprofit to our next interview, this episode is filled with stories about women who loved others with heart defects and decided to make a difference in the world around them.

Segment 2

HUG Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. 

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HeartToHeartWithAnna.com. That's Anna@HeartToHeartWithAnna.com. Now, back to [00:05:00] Heart to Heart with Anna.

Anna Jaworski: Today's guest is Kate Doherty-Schmeck. Kate Doherty-Schmeck is the first full-time executive director for Global Alliance Rheumatic and Congenital Hearts.

Anna Jaworski: Which, thankfully, they have abbreviated to Global ARCH, because that's so much easier to say. This is a childhood-onset organization improving worldwide outcomes in childhood-onset heart disease by empowering patient and family organizations, like Hearts Unite the Globe. 

Anna Jaworski: Kate holds a Bachelor of Science in Public Health from the University of Massachusetts Amherst and studied abroad in Barcelona.

Anna Jaworski: With experience in data registries, program management, and international global health, Kate has worked to improve outcomes for those living with childhood-onset heart conditions. Her most impactful role was managing the International Quality Improvement Collaborative for Congenital Heart Disease, the [00:06:00] IQIC, at Boston Children's Hospital, where she collaborated with healthcare centers specializing in congenital heart disease, or CHD, and rheumatic heart disease or RHD worldwide. We don't talk about RHD on this podcast very much so I'm really glad Kate is here for us to talk about that a little bit today. Global ARCH was founded in 2017 and has grown from 21 countries to a thriving global network of leaders. So welcome to "Heart to Heart with Anna," Kate. 

Kate Doherty-Schmeck: Thank you. It's so wonderful to be here.

Anna Jaworski: I'm so happy to have you. I met you in person in Washington, DC. Golly, I guess it was a little over a year and a couple of months ago now. This is way overdue. 

Kate Doherty-Schmeck: Yes, I'm so excited. And, Anna, I've listened to your podcast, the incredible guests you've had on, and it's just such an honor to be here and your daughter's presentation for the Ollie Hinkle Heart Conference as well, which was truly incredible.

Anna Jaworski: Well, [00:07:00] thank you so much. That means so much to me. That was her first time to do a speech for a heart group. And she was so nervous, but I felt like she did a really good job. 

Kate Doherty-Schmeck: She did. Oh, she did excellent. Please share my congratulations to her. She did excellent. 

Anna Jaworski: Oh, thank you. I will. Let's talk about what inspired you to dedicate your career to improving outcomes for those with childhood-onset heart conditions. 

Kate Doherty-Schmeck: So, as silly as it sounds, I always knew I wanted to work in global health, especially in maternal and child health. At the core, I knew that healthcare was for me, and I even went to medical camp as a child. So dorky yes. 

Anna Jaworski: Did you really? That's adorable! 

Kate Doherty-Schmeck: Amazing. And it really helped to reinforce that this was for me. But I always knew I wanted to do more global work. I was drawn to work that really made a true impact and brought real change.

Kate Doherty-Schmeck: My aunt's a [00:08:00] nurse and has always been an inspiration to me. I saw what she did as a nurse and also as a mom, too. She has four children. Three of them have type-one diabetes. She helped me not only be an inspiration, but also helped me realize I didn't have to be in a clinical role to make a difference in this field.

Kate Doherty-Schmeck: And I knew that I wanted to focus on an area of medicine that had a strong personal connection to me. I'd be happy to share a little bit more too about my brother and other personal connections for congenital heart disease. My parents have always really encouraged me to follow my dreams. And this particular role is truly a dream come true. It takes everything that I've always wanted to do and puts it into one.

Anna Jaworski: I just love that. That is so special. Yes. If you don't mind sharing, I'd love to hear about your brother.

Kate Doherty-Schmeck: Yeah. So my connection to congenital heart disease is very personal with multiple family members who are impacted by congenital heart disease including my brother and my husband's grandmother, his Mom-Mom. They were both very fortunate [00:09:00] to have a diagnosis and have access to care and have lived very successful lives.

Kate Doherty-Schmeck: My brother was diagnosed at just a few weeks old and his heart condition was actually first found by his pediatrician during a routine checkup. He has an atrial septal defect and a ventricular septal defect or ASD and VSD. He luckily never had to have surgery, but was on medication and overall, this early diagnosis really made a world of difference in his care and his overall outcome.

Kate Doherty-Schmeck: I'm so proud of him. He's incredible. He's an aeronautical engineer so he builds planes. Yeah. He's amazing. So, he's a pilot, he's a proud father of almost two little ones--my nephew, who's four, and my sister-in-law is actually expecting the arrival of my niece who's coming soon.

Anna Jaworski: Oh, my goodness! Yeah, that's so exciting. 

Kate Doherty-Schmeck: We're very excited. 

Anna Jaworski: And the cousins are all close in age. We didn't talk about that in the opening, but you're the mom of two children, and you have a four-year-old. 

Kate Doherty-Schmeck: Yeah. [00:10:00] So my nephew is four months younger than my son. They're both four years old now and they're best friends.

Kate Doherty-Schmeck: They just absolutely adore each other and it's so sweet. And I have a daughter who's almost two so she'll have another little best friend cousin as well. So it's so lovely to see those bonds that are built between cousins. 

Anna Jaworski: Oh, that is so lovely. Were both of his children heart healthy? 

Kate Doherty-Schmeck: Yes, we all had fetal echoes done and performed and thankfully, they do not have any heart conditions. My son was born with a heart murmur, but other than that, it was clear after, a few months. 

Anna Jaworski: Right. My granddaughter also was born with a heart murmur and it cleared before she was one, to my huge relief. 

Kate Doherty-Schmeck: Yeah, it's nerve wracking. I remember sitting in the fetal echo for both of my kids during pregnancy and I worked in the field , at that point, as they went through it, they're like, "Okay, here it is. Here it is." And looking at it, and not being clinical myself, but just knowing. 'Okay. It's okay. We can handle anything. We can handle anything.' 

Anna Jaworski: Absolutely. And then you said your husband's grandmother... 

Kate Doherty-Schmeck: Yeah, so [00:11:00] my husband's grandmother, his Mom-Mom, my kid's Babcia, was diagnosed later in life, but thankfully caught it in time.

Kate Doherty-Schmeck: I had to rave about her as well. She wakes up the lives of every one of our family members. She just brings such love and affection and care to all of our lives. Especially my children, my husband and his sister and many others in our family. The love and connections that she brings to her local community as well, are just truly incredible. Actually, a part of Global ARCH, we do some storytelling on social media that we recently launched and we'll be sharing her story about her journey with CHD. 

Anna Jaworski: Okay. Wow. That's really cool. It sounds to me though, that you had already made this decision to work in global health long before you got married. 

Kate Doherty-Schmeck: Absolutely. And I think that, from seeing how lucky my brother was, I knew I wanted to make a difference in those lives and not everyone has that same right to help there.

Kate Doherty-Schmeck: And seeing how [00:12:00] my brother's future has grown and the family and the joy that he brings to those around him. I wanted to make a difference in this field because of that. 

Anna Jaworski: I love that. So was there a pivotal moment or is this just something that you have felt in your heart all your life?

Kate Doherty-Schmeck: There was actually, and there's actually two, but I have to say that they're both based on people. And, this kind of goes along with what you said. It's just like kind of talking to people and getting to know them and the power that plays. I know you shared that too, that you love that.

Kate Doherty-Schmeck: And that's something important to me as well. The two key things I'll point out are, the first was the first international trip I did for work when I was at Boston Children's.

Kate Doherty-Schmeck: I visited hospitals in Mexico and Guatemala and Costa Rica. I saw the incredible work that was being done at each of these centers and with the limited resources that are available there, as well as the incredible work that was being done at Boston Children's. However... 

Anna Jaworski: Boston Children's is amazing. 

Kate Doherty-Schmeck: It's amazing. the team there, the nurses are just truly incredible. [00:13:00] To this day, I still remember we were doing a tour of the hospital in Guatemala, the incredible center. And, there was a baby in the hallway and the baby looked to be around seven to eight months old. And I asked the clinician, that we were with, a little bit more about the baby.

Kate Doherty-Schmeck: And I said, "Oh, how old?" And he shared that the baby was about one year old. And it shocked me and I said, "Can you share a little bit more?" And the baby was having failure to thrive because there just weren't resources available in Guatemala and it was not the fault of the parents.

Kate Doherty-Schmeck: It was not the fault of the nurses. They were doing everything in their power to help this baby survive and have a good life. But 90 percent of the world does not have access to cardiac care. Let alone other health care. And I wanted to be part of changing this.

Anna Jaworski: One little baby really made an impression on you then. 

Kate Doherty-Schmeck: Absolutely. I still think of that baby to this day and about the teams there and their incredible work that they were doing and their families. I think about it still to this day. 

Anna Jaworski: Yeah. Wow. And then you said there was [00:14:00] another pivotal moment.

Kate Doherty-Schmeck: Absolutely. So the second is more about people and it's like multiple events but I've had the honor to meet such incredible people in my life. Those who inspire us and those who drive us to be better versions of ourselves, both personally, as well as professionally, and I can remember certain things people have said to me or the way they helped me to this day, which I know is not just one exact moment, but I think truly served as accumulation of why I'm so committed to this. They really helped drive me or inspire me in ways that they may not even realize to this day.

Kate Doherty-Schmeck: I think the impact that they've made for me is something that I hold so close to my heart as well. 

Anna Jaworski: I love that. Let's talk about a specific, project or initiative that you've been involved with working with patients or families with CHD or RHD, because I really wasn't aware of how prevalent RHD was until I joined Global ARCH. I'm learning all kinds of [00:15:00] stuff from you all.

Kate Doherty-Schmeck: I love that and I think that's one of the key things about Global ARCH is sharing all those stories, and having that ability. I can talk about Global ARCH all day. And I will, but really quickly, I want to feature some of the work that I did prior to joining Global ARCH when I was at Boston Children's.

Kate Doherty-Schmeck: When I was there, I worked on multiple international collaborative projects, as well as seeking quality work domestically here in the U. S. One of them in particular that you mentioned, Anna, was the International Quality Improvement Collaborative for congenital heart disease.

Kate Doherty-Schmeck: It's an incredible initiative and it brings together over 80 hospitals, I think it is now, in low-income countries to collect data about surgeries and cardiac catheterizations for congenital heart disease. It uses that data to really drive quality improvement efforts. What does it actually do?

Kate Doherty-Schmeck: What is the impact that it makes? Well, it really helps to empower the teams to make a difference. It creates institutional changes throughout the [00:16:00] hospital to really help to change the outcomes for the patient. One example that they do is they collect a lot of data about infection to really help with infection prevention and control.

Kate Doherty-Schmeck: One of the things they focus on for their education, and it sounds so simple, but makes a huge impact, is handwashing. 

Anna Jaworski: it does make a huge impact. 

Kate Doherty-Schmeck: Yeah, exactly. Handwashing makes a huge impact on patient outcomes, especially on infection rate. There's been shown that there's increase of mortality--patients dying--when they have more infection.

Kate Doherty-Schmeck: That was before I joined Global ARCH, but during my time there, I saw the impact that patients and families could also play on that by calling out their clinical team by not washing their hands and that they could play a part in this, too.

Kate Doherty-Schmeck: I think that my time at IQIC really brought me so much joy, first of all. I absolutely love that project, and urge people to learn more about it, but also the knowledge of how there's collaboration between the clinicians and the [00:17:00] clinical medical teams, as well as patient and families overall, and the impact that we can make together.

Anna Jaworski: Right, right. Because. When you get data, especially something like that, that points to something very easy that we can all do, it's amazing the impact that you can have. It's funny, I just saw my doctor yesterday for my well-woman checkup, and in the room where I was being seen, and in the bathroom, there were signs reminding us to wash our hands. It's cold-and-flu season. Make sure you wash your hands. I bet those kinds of signs are now more predominantly seen in hospitals all over the world, partly because of the research that's been done. 

Kate Doherty-Schmeck: Absolutely. Absolutely. I actually read a book to my son during bedtime, about Louis Pasteur and the work he did to identify the impact of germs, good germs and bad germs and the importance of hand washing.

Segment 2

HUG Message: "Heart to Heart with Anna" is a [00:18:00] presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources, Pertaining to the CHD community, please visit our website at www.congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD summer camps for CHD survivors and much, much more.

You are listening to "Heart to Heart with Anna." If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HeartToHeartWithAnna.com That's Anna@HeartToHeartWithAnna.com. Now, back to "Heart to Heart with [00:19:00] Anna."

Anna Jaworski: Kate, what made you decide you wanted to become involved with Global ARCH? 

Kate Doherty-Schmeck: My personal connection with my brother and my grandmother-in-law was a really major player in this, as well as my other family members who are impacted by congenital heart disease. I wanted to join an organization that was dedicated to patients and families and really on collaboration. Global ARCH is dedicated to expanding access and support for those who may not have it. The same access, the early diagnosis and care and services.

Kate Doherty-Schmeck: I wanted to be part of something. Thing that helps provide the future of that love and the joy and the family and the ability to make an impact on our community that my brother and my grandmother-in-law had no matter what your zip code is. It shouldn't really matter where you're born; you should still have that ability to have that future.

Anna Jaworski: I love that. 

Kate Doherty-Schmeck: Yeah. I think it really drives everything I've done [00:20:00] in the collaboration. My husband teases me that, that's my favorite word, but it really is! It really does make a huge impact. And we are all stronger together. We can't do this alone.

Kate Doherty-Schmeck: And that makes a huge difference. And that's what I love about Global ARCH. 

Anna Jaworski: How did you hear about it? 

Kate Doherty-Schmeck: I knew about Global ARCH from the start. Disty Pearson and I worked together. Disty is one of the co founders of Global ARCH. And we worked together at Boston Children's.

Kate Doherty-Schmeck: She helped with some of the IQIC work as well. 

Anna Jaworski: I love Disty. She's amazing. 

Kate Doherty-Schmeck: I love Disty. She really is. She's just absolutely wonderful. And I just connected with her very early on personally. One of the other founders, Bistra Zhelva, who works at Children's Heartlink, has also served as a mentor to me. When I left Boston Children's, I still volunteered with Children's Heartlink. I couldn't let this area go. I took some time off after I had my daughter from any work, any volunteering. And when I returned to start to volunteer again with Children's Heartlink, Bistra said to me, " Global Hearts was looking for an executive [00:21:00] director."

Kate Doherty-Schmeck: She encouraged me to talk to Amy Verstappen, who's our current board president. I got involved that way. 

Anna Jaworski: That's awesome. I love that.

HUG Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Segment 3

Anna Jaworski: I knew when I met you in Washington, D. C., how impressed I was. You hadn't even started your job yet, and there you were, with all of us, part of Global ARCH.

Anna Jaworski: You were on the bus with us, you were going to the talks, you were in the Global Village with us, and that was so much fun. How did attending the 8th World Congress of Pediatric Cardiology and Cardiac Surgery in 2023 jumpstart your career with Global ARCH? 

Kate Doherty-Schmeck: First of all, what an event, right? I've been involved in this field for the majority of my career and have been lucky enough to actually attend the previous World [00:22:00] Congress in Barcelona in 2017. We had an IQIC learning session there.

Kate Doherty-Schmeck: And actually signed in on one of the Global ARCH sessions as well. 

Anna Jaworski: Wow. Okay. 

Kate Doherty-Schmeck: It feels like a full circle moment. And also the lead of IQIC, Dr. Kathy Jenkins at Boston Children's is also the, medical advisory board chair currently for Global ARCH. And she was the founding chair. That is again, a full circle moment for me, that opportunity. 

Anna Jaworski: Wow. 

Kate Doherty-Schmeck: That Barcelona event was incredible. And then this most recent one in D.C. was even more special.

Kate Doherty-Schmeck: And I think what really stood out to me about it was the presence and the inclusion of patients and family organizations. I think overall... 

Anna Jaworski: The global village was amazing, 

Kate Doherty-Schmeck: Amazing, amazing. And making sure that patients and family organizational leaders were on the panels, were on the platform to talk about their experience.

Anna Jaworski: I got to hear Meg Didier and I just love her. She's been on my podcast and I've known her or [00:23:00] of her since she was a little kid because her mother wrote for my book, "The Heart of a Mother" and to see her all grown up and talking at this international conference, it just made my heart swell with pride.

Anna Jaworski: It was amazing.

Kate Doherty-Schmeck: Mm-hmm Meg is incredible. She's absolutely incredible and the amount patients and their families that were on the panels that brought connections and you could see that more personal connection was incredible. Overall though, this event was pivotal for me, at least 'cause it gave me a chance, not only to attend it, but also to meet our members in person, to meet you.

Anna Jaworski: I loved meeting all the people from all over the world. We're all committed in the same way to helping people. 

Anna Jaworski: So Kate, what are some of the biggest challenges facing organizations like Global ARCH in improving worldwide outcomes for those with childhood-onset heart conditions? 

Kate Doherty-Schmeck: Some of the biggest challenges that we face in this area are access to safe and affordable care for congenital, rheumatic and other [00:24:00] childhood-onset heart disease, especially in low- and middle-income countries. 90 percent of the world's population does not have access to care for their condition. There's also invisibility of these diseases and the conditions. They don't receive the attention they need. Childhood-onset diseases and conditions overall don't either, especially outside of cancer, but the impact is there and it's a lifelong condition and we need to pay more attention to it and we are doing work at Global ARCH around that.

Kate Doherty-Schmeck: The other thing is engagement--engagement and more collaboration. I think it's changing and I can see it changing. We'll actually be announcing some exciting news and next steps in the upcoming weeks for Global ARCH on how we're addressing biggest challenges and what we see as the future for up to 2030 and what our goals are. I'm know I'm just teasing it right now, but it's coming soon. 

Anna Jaworski: Okay, so we all have to keep our eyes open. I will put the link to the [00:25:00] Global ARCH website in our show notes, friends. You can check it out periodically and see what they have going on and when you go to their website, you can sign up to be on their subscription list, and then you can get newsletters to find out more information. 

Anna Jaworski: Kate, can you share a success story or a specific example of how Global ARCH has made a difference in a patient's or a family's life?

Kate Doherty-Schmeck: I love this question because this is the core of everything that we do to really make a difference in the lives of patients and families. For Global ARCH, I would say that our real success lies in the shared impact created by Global ARCH's network. For example, through our initiatives like our international collaborations in our community, our educational programs and trainings, we're able to equip dozens of patient and family organizations with the tools they need to advocate for better health care and enhance support locally.

Kate Doherty-Schmeck: The local [00:26:00] leaders are the experts, and we need this larger community to help grow and support those leaders. This approach means that thousands of individuals benefit, even if they may never know Global ARCH directly by name. One powerful example is the way that our members use the knowledge sharing and the resources we provide to promote life-saving practices, such as educating families on early symptoms of CHD and RHD. another challenge for onset-heart disease, or guiding healthcare providers on more patient-centered care models.

Kate Doherty-Schmeck: It's stories like this, of our collective action, that lead to better outcomes and more visibility for congenital, rheumatic, and other childhood and onset-heart diseases globally that I think really speak better to the impact that we strive for and working with the local leaders on the ground. 

Anna Jaworski: I love that.

Anna Jaworski: That's really amazing. It's nice when you can have one solid story where you can point to one person, [00:27:00] but having an opportunity to impact entire communities, even if you don't get the recognition, is actually more impressive. 

Kate Doherty-Schmeck: I always think back to public health focuses more on populations, which we do and then the medicine side focuses on individuals, which our members and organizations do. That makes a bigger impact that when we work together, it shows a greater result overall. 

Anna Jaworski: There you go with your favorite word again, 'collaboration. '

Kate Doherty-Schmeck: I know, right? 

Anna Jaworski: All about collaboration. I love that.

Anna Jaworski: Yeah, that's amazing. We do make more progress when we work together. We have the same goals, but just because you're in Norway or Spain or Mexico or Canada or the UK, it doesn't matter. We all are wanting the same thing. So why not share resources and why not support and encourage each other? I love that.

Anna Jaworski: That's amazing. 

Kate Doherty-Schmeck: And it helps to cut down some of those organizational burdens, too, of trying to [00:28:00] produce all these resources when there's all these resources that are out there. You don't have to recreate something that's already out there.

Kate Doherty-Schmeck: You can just reformat it for your community's needs. 

Anna Jaworski: Right. Or translate it because we don't have resources in every language the way we need to. What is the best way for others to get involved with Global ARCH? Can you tell us if it's only for nonprofits and NGOs, or if even individual people can get involved? 

Kate Doherty-Schmeck: What a fantastic question. All are welcome. We invite everyone to join Global ARCH. Our focus is mostly on organizations that are led by patient or family members who are directly impacted by congenital, rheumatic, or other childhood-onset heart disease.

Kate Doherty-Schmeck: However, we can't do this alone. It's important to have other organizations as partners and individuals as supporters. Each person or organization who joins helps to strengthen this network. They help to empower patients and family. They help [00:29:00] to grow and to amplify the impact of what we're doing. We can't do this alone. We need to do it as a community. We need to do this together. There are always ways to get involved though, in Global ARCH from attending events or raising awareness. You can also volunteer as well.

Anna Jaworski: Why don't you share the website where they can get more information. 

Kate Doherty-Schmeck: Our website is www.global-ARCH.org. Our website actually has the ability to translate to other languages. On our website, you'll find resources and information on what we do and events, and we actually urge you to submit events if there are any other ones that are happening that we're not aware of or hosted by Global ARCH.

Kate Doherty-Schmeck: You can join our community as a member or a partner or as a supporter. Partners are organizations that are not patient and family led, and then supporters are individuals who want to be involved and make an impact. Those individuals or organizations don't have to focus on childhood-onset heart disease.

Kate Doherty-Schmeck: You could focus on other things. You just want to be part of this [00:30:00] work. 

Anna Jaworski: I love that. Yeah, I think philanthropists out there who maybe don't belong to a particular organization, but they're intrigued by what you're doing and they may be interested in helping out. I love that. 

Kate Doherty-Schmeck: We're stronger together and we can make a bigger impact for the futures of these babies and these children, by doing this and for all the adults who are living with childhood-onset heart disease.

Kate Doherty-Schmeck: I'm happy to talk to anyone who's interested in learning more, too. Please reach out, I love that I have the opportunity to learn more about what others are working on too, and to learn more about how we can collaborate, to make a greater impact.

Anna Jaworski: Yeah, I love that. That's just amazing. Before we go, we keep saying onset-childhood heart disease and here in the United States, we're more familiar with congenital heart defects. We're not as familiar with rheumatic heart disease. Can you talk a little bit about what that is and [00:31:00] where people who suffer from that are predominantly found?

Kate Doherty-Schmeck: Absolutely. In the U. S. there has been rheumatic heart disease. However, it doesn't really affect the younger populations here as much anymore. It's more the older populations that are impacted by it because of the strides we've made here in antibiotics and also early detection of things such as strep throat or scarlet fever that cause rheumatic heart disease.

Kate Doherty-Schmeck: So for those who are not aware, rheumatic heart disease is a condition that impacts your heart valves and is caused by strep throat or scarlet fever and it's caused during childhood, but impacts you throughout your life.

Kate Doherty-Schmeck: And it impacts right now, those in low-middle income countries where it's the most prevalent heart disease. There isn't enough work being done about it. It's a preventable childhood-onset heart disease but we need to do more in those countries to make a difference, both in preventing it in early detection and really also helping to support [00:32:00] those patients who are living with it currently. There is some work being done, especially in South Africa and also by the World Heart Federation to really make impacts and in India and globally as well.

Anna Jaworski: I had never met anybody with RHD that I knew of until I went to Washington, D. C., and then several of the people who were part of our global village were adults with RHD. I had no idea how prevalent it was outside the U. S. 

Kate Doherty-Schmeck: It's one of the more common childhood onset-heart disease, outside of the U. S., in low- and middle-income countries and it's not talked about enough. A lot of the care is similar for CHD and RHD, and a lot of the teams that do serve CHD patients also are serving RHD patients. That is a main reason why we focus on both and other childhood-onset heart disease, is that it needs to be a bigger focus, and there's so much similarities that we can do more by really bringing this whole community together.

Anna Jaworski: I love [00:33:00] that. Well, thank you so much, Kate, for coming on the program today. This has been so much fun. 

Kate Doherty-Schmeck: Thank you for having me. It's been wonderful. 

Anna Jaworski: Well, friends, that does conclude this episode of "Heart to Heart with Anna." Thanks for listening today. I hope you found this program helpful.

Anna Jaworski: I will be including the links to Global ARCH. So in case you're driving, or if you're on your exercise bike, you don't have to worry, you can just look in the description of the show and the link will be there. So you can learn more about Global ARCH and hopefully volunteer or join them. If you'd like to be a guest on our program, or you have a great idea for a topic for us to cover, please visit https://www.heartsunitetheglobe.com and send us a note. And remember my friends, you are not alone. [00:34:00]