Transforming Congenital Heart Defects One Heart at a Time with HeartWorks

In this episode of Stories from the River, host Charlie Malouf continues his conversation with Dr. Timothy Nelson, Founder and CEO of HeartWorks. They discuss how HeartWorks is focused on using innovative technology to address heart failure, particularly through the development and transplantation of autologous heart tissue. HeartWorks was the first organization in the world to obtain FDA approval to do an autologous heart transfer procedure.

Dr. Nelson explains the complex, 9-month process of manufacturing cells from a patient's own body to create beating heart tissue, which can then be transplanted back into the patient without rejection. He also shares success stories of patients who have benefitted from these groundbreaking procedures, highlighting the transformative outcomes that HeartWorks is aiming to achieve.

The episode also delves into the purpose, vision, and mission of HeartWorks, emphasizing the urgency to treat congenital heart disease (CHD) and its commitment to redefining the possibilities in medical research. HeartWorks builds hearts to cure CHD. They are a clinical stage nonprofit working to make that vision a reality.

Dr. Nelson explains the 5 things that they think about at HeartWorks:

1. Motivated by the urgency of congenital heart families. Put the patient first.
2. Motivated by transformative outcomes. A pathway to a cure. To go rebuild the heart to have a transformative outcome.
3. Undeterred by obstacles. No way that this will be a linear path. No way that this will be simple.
4. Synergistic and winnable for hospitals and patients. Inspire, motivate, and align people.
5. Committed to a self-reliant ecosystem. Building a platform where this technology can be applied to anybody with heart failure.

Dr. Nelson introduces the transformative concept of data donation, where individuals with congenital heart disease can contribute their medical records to create a repository that will revolutionize the way medical research is conducted, potentially leading to faster and more targeted product development.

HeartWorks created a new movement around "Data Donation" when they launched a Co-Op at their annual fundraiser event with the goal of getting 50,000 people with CHD to donate their data, which Dr. Nelson explains with accelerate their clinical trials by 4X. As Dr. Nelson explains, no hospital is large enough to take on a challenge such as this on their own; however, HeartWorks as a nonprofit, trusted partner can work across any hospital and bring patients together to create this transformative data repository. Dr. Nelson emphasizes that it is important for patients to realize that they own their medical records, not hospitals, and can donate their medical records data (such as history of surgeries and cardiac imaging).

Charlie and Dr. Nelson discuss the relationship between HeartWorks, Ashley Furniture, and Broad River Retail and the benefits that each organization receives from the relationship transcends monetary value. This conversation underscores the collaborative and transformative nature of HeartWorks' work as well as its reliance on community support and partnerships to drive the organization's mission forward.

Additional Resources:

00:00 Introduction
00:38 HeartWorks today
02:00 FDA approval
03:47 Success stories
06:55 Mission and vision of Heartworks
08:48 Obstacles
12:25 Ashley's invovlement in Heartworks
13:53 Virtual cooking
15:48 Partnering with each other
18:20 Leadership council
20:20 What does HeartWorks need?
21:47 Data donors
24:47 Conclusion

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