HLHS

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.

Follow the program on Facebook at Mayo Clinic HLHS, on Twitter @MayoClinicHLHS, and on Instagram at MayoClinicHLHS.

PUBLIC PAGE
Jan 6 9:40am

Interview with Tim Nelson, MD, PhD - Director of the Wanek Family Program for HLHS

By Brianna N. Tranby, @briannatranby

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2020 marks the 10 year anniversary of the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic! To kick off the celebration, I sat down with the program’s director, Dr. Tim Nelson, for a look back at the first 10 years – and a sneak peek at what’s coming next.

 

Tim, take us back to the beginning. How did you first meet the Wanek family?

I had the privilege of meeting Todd and Karen Wanek back in 2009. The family had long been patients of Mayo and were here looking at what was being done in the research community, specifically in the Mayo Clinic Transplant Center. They wanted to know what’s being done to change the way we take care of congenital heart disease (CHD) patients in the future.

We got to talking and I showed them the lab, and before we knew it, we were proposing a grand plan for them to fund a transformative program to do something that had never been done before. It was kind of a fast and furious introduction and planning of the program in 2009.

 

What inspired you to help create the Wanek Family Program at Mayo Clinic?

I was a medical student at the Medical College of Wisconsin in Milwaukee in the late 1990s and they were well-known for their care of complex CHD. I was actually aspiring to be a cardiothoracic surgeon, but I was doing my PhD in research at the same time and realized that many of the treatments we did were quite simple – even old-fashioned – and the outcomes of our patients were not what anybody wanted.

We were doing research with cell-based technology because Dr. James Thompson in Madison had developed the first embryonic stem cells in 1998. So there was a lot of excitement in Wisconsin about the future of stem cells. Then I came to Mayo with the Clinician-Investigator Training Program and got more involved in research. So when I met the Wanek Family, it was perfect timing because technologies had developed to the point where there was a real chance at bringing cell-based therapies into clinical practice. It was that vision that led us to double-down on research innovations as the pathway forward.

 

What have been your “Top 3” highlights with the HLHS Program over the last 10 years?

That’s hard to answer because there have been so many! And sometimes one that you don’t think is a big deal actually becomes the thing that unlocks the future.

One, for sure, was just meeting the Wanek Family, and the moment when they agreed that we could do something massive together. I remember that being an awesome opportunity, but I also immediately felt an awesome responsibility to do something that no one had ever done before.

The next was the day we got the call from the Food & Drug Administration (FDA) that our first clinical trial was approved to open. Clinical trials take years of planning, so that moment and that sense of accomplishment with our team was an awesome responsibility once again.

But the responsibility of what we’re doing culminates in the greatest highlight of all – actually treating each and every patient. Our work is about giving families hope that they didn’t have before. And that’s another level of responsibility that everyone on our team appreciates.

 

With over 60 people in the Program, we have the largest HLHS-focused research team in the world. But we’ve also now created the nationwide HLHS Consortium. For anyone who doesn’t know or still has questions, what is the HLHS Consortium?

That’s a great question to clarify because the HLHS Consortium is a unique group. We realized that our program had built an incredible infrastructure to support research.  However, the rarity of HLHS means that each hospital only sees few of these patients each year.  So although Mayo has a great heritage of breakthroughs including the heart-lung machine and outstanding clinical practice, the size of our practice here was just too small to support our research by itself. So we started expanding to more institutions to include more patients in our studies.

The HLHS Consortium today spans the country and includes hospitals and advocacy groups that are committed to providing the best care for CHD patients. But they’re also committed to innovating and transforming the future of HLHS and CHD with new products and services. So it’s a really unique club that works together to expand technology to our patients.

The identity, direction, and focus of our Program at Mayo Clinic will always be HLHS. But the Consortium allows us to expand to other sites, and also allows us to start taking on other challenges in the congenital heart world so we can enhance the impact of what we’re doing beyond just HLHS. I think this is the really exciting part of where we’re going – our HLHS-focused work at Mayo will help guide us as we take on other CHD problems with groups across the country.

 

What are you working on right now that people can look forward to in 2020?

The pride of what we do is clinical trials and offering hope to families. As of today, we’ve treated 70 patients with CHD in four different clinical trials. Our goal is to continue to increase the number of patients treated, and doing that takes new protocols, new treatments, and new products. What we talk about on a daily basis around here is “What is the next clinical trial? Where do we go? How do we do better with our resources and technologies?”

We’re developing new trials that we expect to announce in 2020. Looking beyond this year, I anticipate that we’ll move toward bioengineered cells where we can actually create beating, contracting heart tissue from induced pluripotent stem cells, and that we’ll start printing and making tissues or constructs that will be surgically applicable. This is our commitment and the next frontier, and our team’s experiences over the past 10 years will help us to more aggressively take on the new technology that’s coming.

 

On that note, when we talk again in 2030, what do you hope will have been the “Top 3” moments of the HLHS Consortium and our work?

I envision that there will be a day when, as much as we celebrated the first FDA-approval to open a clinical trial, we will be celebrating much bigger when we have FDA-approval for a product. When the product goes beyond the testing phase and becomes a standard operating procedure for all patients, that’s the goal that we’re all working towards.

In addition, I can imagine the stories of hope from patients across the country, and maybe even the globe, as we pioneer new products. One product isn’t going to be the solution for all patients, so the goal is building a sustaining ecosystem in which developing one product leads to us being able to research and develop five more products. Those are definitely going to be the accomplishments that we look back on with pride.

It’s amazing how fast 10 years goes! Day to day, we can lose sight of what our teams have accomplished and the massive amount of work that everyone does. To have our infrastructure and ability to do important work for CHD patients is a real privilege, and we’re grateful to the Todd and Karen Wanek Family for their commitment and allowing us to do what we’re doing together.

 

Stay tuned for some exciting announcements from the HLHS Program and Consortium this year!

 


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. Our 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 us at HLHS@mayo.edu to learn more.


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

 

 

 

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