This podcast aims to capture the insiders view of the collaborative efforts to discover, develop, and deliver a CURE for single ventricle congenital heart disease such as HLHS. This journey is told with the patient’s perspective guiding the scientists, engineers, product development teams, and the physicians and surgeons that work daily to produce new solutions. Complex congenital heart disease (CHD) is going to be transformed by a team-of-teams collaborative approach that is centered on the unmet needs of the patient. Join the team!
The rebel stage, anxiety, being comfortable with your cardiologist and the importance of finding your crew. Adult HLHSer, Meagan Houpt and I talk about these ups and downs + many more topics. Meagan is an honest and real role model in the CHD community. Connect with her and her crew on Faceboook/My HLHS Story-Meagan Houpt and Instagram/MeaganHoupt-HLHS. Text ‘Cause2Cure’ to 833.222.0186 to receive updates from the HLHS Consortium and C2C Podcast.
24 Jun 2020
Daniel's 550-mile Hike with HLHS
My conversation with Daniel is filled with adventure and inspiration. Daniel describes his 550-mile walk through Spain and living in another country with HLHS.
We end today's episode with practical and powerful questions about genetics, research, and the future for adults with HLHS.
Share Daniel’s incredible story on social media
Learn more about our research at hlhsconsortium.org
Text 833.222.0186 for research and podcast updates
10 Jun 2020
Kelly DiMaggio on Mental Health, Exercise and Finding Your Soulmate
Kelly is an adult with half a heart, living life to the fullest. On today's episode, Kelly shares her thoughts on the power of exercise, how adults with HLHS have pushed the comfort level of many physicians and what changes she wants to see in the CHD community. Kelly has not only cultivated these insights from her personal experiences with HLHS, but from her husband who recently learned that he also has CHD.
Visit https://www.lovinglately.com/ (https://www.lovinglately.com/) to read Kelly's blog.
Visit https://www.hlhsconsortium.org/ (https://www.hlhsconsortium.org/) to learn more about the HLHS Consortium.
3 Jun 2020
Jessica Lindberg: Give Yourself Grace
On today’s episode, I have a very authentic and transparent conversation with Jessica Lindberg. Jessica is an entrepreneur, a heart advocate, a writer/speaker and a proud mother of four boys. Her empowering message will leave you feeling HEART STRONG. To learn more about the Ethan M. Lindberg Foundation visit https://www.ethanlindberg.com/ To learn more about the HLHS Consortium visit https://www.hlhsconsortium.org/
1 May 2020
Greg Olsen: Find Your Role
NFL tight end, Greg Olsen and his family have found their role in the CHD community. Today, we talk about the Olsen family’s heart journey, what Receptions for Research: The Greg Olsen Foundation has accomplished in Charlotte, NC and our collective mission to amplify local efforts and converge those efforts into a national platform for congenital heart disease.
Receptions for Research is an official member of the HLHS Consortium. The HLHS Consortium aims to accelerate the transformation of research and development into cell-based therapies that can benefit the lives of people living with CHD. Visit https://www.hlhsconsortium.org/ to learn more about our clinical trials. Visit https://receptionsforresearch.org/ to learn more about the Olsen family’s mission and purchase an awesome “Halve a Heart” T-shirt.
17 Apr 2020
Bella and Erin Borkowski
I had so much fun recording today's episode with Bella and Erin. After the first couple minutes, you will understand why! Erin and I talk about how Bella has inspired the Borkowski family and their community. We are grateful to be connected with local platforms, like Beats for Bella, that truly drive change in the heart world. Visit https://beatsforbella.org/ to learn more about the family's organization.
10 Apr 2020
Part 2: Meg (Roswick) Didier
On today’s episode, Meg (Roswick) Didier and I discuss the next set of milestones that Meg has tackled and is currently encountering: a career, marriage and starting a family. Meg also asks me a very important question: what is the HLHS Program doing for her and other adults with HLHS? Follow Meg on Facebook at Meghan Roswick-HLHS to learn more about her journey. Text Cause2Cure to 833-222-0186 for more updates from the HLHS Program.
4 Apr 2020
Part 1: Meg (Roswick) Didier
Meg (Roswick) Didier has become a role model to many in the heart world. In this two part series, Meg and I will discuss what it was like to be one of the first HLHSers to tackle many of life’s milestones. Today, we cover her diagnosis, growing up post-Fontan and entering college. Follow Meg on Facebook at Meghan Roswick-HLHS for more details.
20 Mar 2020
Gabrielle Wanek's Advice to CHD Families: Trust Your Kids!
Today I have the privilege of hosting a very important guest, Gabrielle Wanek. Gabrielle is not only the inspiration for the Wanek Family Program for HLHS, but an inspiration for all young adults and families affected by CHD. Her stories and advice will empower you to trust and encourage your heart warrior as they become thriving adults.
13 Mar 2020
My Interpretation of “Where Focus Goes, Energy Flows”
Today’s short episode covers the big and bold things happening at the HLHS Program thanks to Todd and Karen Wanek’s strategic investments and our cross functional, purpose-built team. This team has an intense focus on the needs of the patients, continuous improvement and product development. Text Cause2cure to 833-222-0186 to receive updates from the HLHS Program.
Thanks, Gene Lunger for the great interview!
6 Mar 2020
Dr. Frank Cetta's Opinions on Second Opinions
On today's episode, Dr. Frank Cetta of Mayo Clinic will discuss his thoughts about second opinions. We will be asking many physicians about their thoughts on this very important topic. I am excited to have Dr. Cetta kick off the series; the analogy he uses truly expresses his commitment to putting the patient first!
28 Feb 2020
A Heart Dad's Advice: Be Present
Marc Stoll is my mentor, friend, a member of the external advisory board for the HLHS Program and most importantly, he is the father of a heart champion-Nathaniel. Marc has brought intense insight and focus to the HLHS Program. Now, he shares his perspective on hope, being present and gaining control. This is an episode you do not want to miss.
20 Feb 2020
CHOP 2020: Opening Plenary Session
Did you know that Fontan circulation has been solved for over 100 million years? My TED style talk at CHOP 2020 analyzes the species that has figured it out + shares HLHS Consortium research updates. Follow along with the slides posted on https://www.linkedin.com/in/tim-nelson-cause2cure
Our goal is to be the best collaborative partner for the CHD community. Our competition is CHD.
8 Feb 2020
Ava the Superhero is Back for an Interview with Mayo Clinic Radio
I had the privilege of interviewing alongside my favorite superhero, Ava! Both Ava and her brother, Miles, have HLHS and are paving the way for other kiddos with CHD. Tune in to learn more about Ava's superpowers.
7 Feb 2020
Pioneering Patient Perspective with Gene Lunger- Diagnosis and Treatment of Congenital Heart Disease
Gene Lunger takes me back to the 60’s with his emotional moments when his family learned about his diagnosis and his first memories of CHD. We honor the pioneers of innovation who created the heart-lung machine and look forward to future of biomedical innovation.
4 Feb 2020
Umbilical Cord Blood Collection 101 with Staci Strand
Staci Strand, a heart mom, and I walk through questions her family had about umbilical cord blood collection. When you receive the overwhelming news that your baby has been diagnosed with HLHS, there will be an information overload. I created this episode as a resource for you to listen when the dust has settled a bit. Although cord blood collection may not be top of mind, it is a decision that needs to be made before the birth of your heart warrior.
3 Feb 2020
The Todd and Karen Wanek Family Program for HLHS Celebrates Ten Years
This episode reflects on the Program's history and highlights from the last ten years, provides a current update and shares what we plan to accomplish in the future. To have our infrastructure and ability to do important work for CHD patients is a real privilege; we are grateful to the Todd and Karen Wanek Family for their commitment.
17 Nov 2019
Tim Nelson, MD/PhD interviews a superhero after having a surprise visit to our HLHS headquarters.
Ava and her younger brother Miles both have HLHS. Ava was the first baby to have umbilical cord blood collected and her family have been pioneers on many fronts. The HLHS program is grateful for kiddos like this. Just listen.
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