The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a research program with the goal of delaying or preventing heart failure for individuals with HLHS.

To learn more or to participate, please visit our website or contact HLHS@mayo.edu.

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Dec 20, 2018

Interview with Dr. Tim Nelson, Director of the HLHS Program

By Stephen Rowley, @sjrowley


My name is Gabrielle Wanek and I’m an intern here at Mayo’s Todd and Karen Wanek Program for Hypoplastic Left Heart Syndrome. I had the opportunity to interview Dr. Tim Nelson, the director of the HLHS program.


Gabrielle: Can you tell me what research is currently taking place?


Tim: That’s a big question. Where do I start? We are most excited about the clinical trials that are going on that are engaging families and individuals with HLHS. These are the first clinical trials where we deliver an individual’s own stem cells into the heart muscle during surgery and other procedures. That research is probably the most exciting thing that we are doing today. Over 25 patients have been involved in these trials across three different studies.


Gabrielle: Can you tell me a bit more about the clinical trials?


Tim: The first clinical trial we started uses the patient’s own umbilical cord blood. The patient must be diagnosed with HLHS in utero. We collect and process the cord blood and then when the child has their second surgery, we deliver it into the heart muscle during the surgery. We have learned a lot in our first ten patients and are hoping to soon move into a second phase of the clinical trial, which will include more patients.


Gabrielle: How do you see this as being the future of regenerative medicine?


Tim: The future of congenital heart disease and regenerative medicine are intimately related to one another. They are younger patients, they have specific needs and the stem cells are able to directly address those needs of patients with congenital heart disease. The future of this is really bright and there is a worldwide effort right now to really work aggressively to master this technology and translate it into real world clinical applications. There are many people living today that are going to see the direct benefit of this technology in their lifetime. It’s very exciting and it's only possible because we have such a dedicated, focused large group of people that are working on one specific problem. That’s where the magic happens.


Gabrielle: What is the most important thing HLHS families should know about the program?


Tim: That’s a great question. I would say that the most important thing is that the science and technology that we are working on today is specifically meant to have a massive impact on families living today. This is not a science project that will hopefully one day lead to new knowledge. This is specifically engineered with the purpose and intent that this technology can and should make a difference in the lives of patients that are dealing with these problems today.


Gabrielle: What’s your day to day like?

Tim: My day to day is helping manage and build a cross-functional team of people. We have a team of 60 people strong that go from physicians to surgeons to nursing staff, scientists, engineers and technicians in the lab. My primary job is to synchronize the professional activities of these individuals so we are all working for a common purpose and goal. That may sound trivial, but in academic research that does clinical practice to be able to get everybody to focus on a single problem is what dominates my energy on a day to day basis.


Gabrielle: Why was Feel the Beat created?

Tim: Feel the Beat is the best event of the year. It was inspired by a few of us in the program that were interacting with families, specifically children with HLHS, and it was so inspiring to us it became a reality check. We realized many people in our program t don’t even know a family or patient with HLHS because of how rare the disease is. This was also an opportunity for families to get a behind the scenes tour of the science and technology that we work on and for families to connect with others. What happened was quite magical. The team now all had a face and a name of a patient or child with HLHS. They had an exact reason and purpose for doing what they do.


Gabrielle: What’s it like working with the Wanek Family?

Tim: I can honestly say this without any hesitation. Working with the Wanek family, specifically Todd and Karen, has been the most challenging, rewarding, and fulfilling job that I’ve ever had. The reason for that is because the Wanek family has the vision of growing and becoming the best at whatever they do. When you add that mindset to what we do in health care you have something really unique. You have the ability to grow and to do far better than what we think is possible today. How do you go beyond limitations of what we do today? It has really been the inspiration and vision that the Wanek family has brought to us at Mayo Clinic and to us in the HLHS consortium across the country. I truly don’t think that was possible without this direct and specific leadership and mentorship of the Wanek family.


Please note that we are no longer enrolling patients for our bone marrow study.

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.


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