Build Consensus First: Interview with John Lehr, CEO of The Parkinson’s Foundation

Several years ago, I interviewed John Lehr, CEO of The Parkinson’s Foundation, in an interview originally published in Thrive Global. Here is an excerpt from our conversation:

Adam: Thanks again for taking the time to share your stories and advice. First things first, though, I am sure readers would love to learn more about you. What is something about you that would surprise people? 

John: My career path is fairly surprising! I was a history major in college, and initially, I planned to get my Ph.D. and teach. As my interests evolved, though, I joined the Peace Corps, serving in Sri Lanka in the early 1990s. I taught English there and promoted small business development. I was planning to go into the foreign service after the Peace Corps.  

What really struck me about my time in Sri Lanka was that the people there were brilliant, but lacked resources and access to capital to fully develop their country. The biggest takeaway for me was how crucial funding is to get great ideas off the ground – and ultimately, I pivoted my career path with this in mind. 

Adam: What are your hobbies and how have they shaped you as a leader? 

John: I like working on my house.  Every house I have owned needed a lot of work, both inside and out. I love spending my time fixing up the place, transforming something “not so great” into something much better.  I painted houses in college and in graduate school, so I do all my own painting. It is so satisfying to see the transformation of a place in a short period of time.

Adam: How did you get here? What experiences, failures, setbacks, or challenges have been most instrumental to your growth? 

John: After returning from the Peace Corps, I worked in corporate and foundation relations, and then institutional and major giving, at the Children’s Hospital of Philadelphia – one of the best children’s hospitals in the world. From there, I became a vice president at the Cystic Fibrosis Foundation (CFF), an experience that was truly transformational. While CFF had made tremendous progress in understanding the basic biology of the disease and controlling its symptoms, it was seeking a longer-lasting medical solution so people afflicted with CF could live longer, healthier, and fuller lives. Getting to that solution, however, required a significant increase in funding for promising new medications. Over five years, I helped CFF raise $175 million to accelerate research for that purpose. In the end, two drugs were developed that have transformed CF from an ultimately fatal disease to a more manageable disease.  This furthered my conviction that pairing innovative ideas with the appropriate funding can lead to life-changing discoveries and breakthroughs. I think the same success can be achieved for Parkinson’s disease (PD). 

In 2016, two PD nonprofits merged to become the Parkinson’s Foundation. I was hired as CEO the following year. In just five years, our team has significantly expanded our mission as a result of far greater resources from fundraising. This has allowed us to grow exponentially and provide even more research grants, resources, care, and education for people with PD. Just last month, we announced that we are investing an additional $10 million in our mission programs to make life better for people with PD. In FY 2022, we will spend more on mission programs than ever before.

Adam: In your experience, what are the defining qualities of an effective leader? How can leaders and aspiring leaders take their leadership skills to the next level?

John: Above all, effective leaders have a clear vision for what they want to accomplish. They then convey that vision to their team in a way that inspires and motivates people. They focus on the big picture – the long-term vision, but with a clear understanding of the steps needed to get there. 

Additionally, effective leaders acknowledge when they’ve made a mistake or the wrong decision, and they learn from those mistakes. Similarly, they learn how to improvise. Often, an organization will find itself in a situation without a playbook (for instance, how to continue growing during a once-in-a-century global pandemic), and it’s up to the leadership to assess the situation, devise a plan, take risks, and improvise based on new information and data.  

For those who are seeking to improve their leadership skills, the best way is to learn from other leaders they admire in the organization or at other organizations. Pay attention to how they treat their colleagues and staff, how they react to tough situations, and how they maintain a positive attitude even in adversity. You can glean so much from strong role models.

Adam: What are your three best tips applicable to entrepreneurs, executives, and civic leaders?

John: First, establish bold, but reachable goals. For example, the Parkinson’s Foundation team knew that understanding the genetics of Parkinson’s disease is critical to advancing PD treatments. In order to gain that understanding, though, we need to screen thousands of people with PD to collect reliable data – a Herculean task. We began by assembling an incredibly knowledgeable, diverse team who, together with outside guidance, designed a plan to accomplish this lofty goal, while gathering the resources to get the project off the ground. Not only did we successfully complete a pilot study, but we expanded access to the study’s second phase by increasing the number of testing sites as well as creating a telehealth version. The study, PD GENEration, has the potential to be a game-changer when it comes to developing treatments for PD.

Second, invest time in listening to your constituents – don’t assume that you know their wants and needs. The Parkinson’s Foundation team does this frequently through many channels, including PF Surveys, a program to routinely poll the greater PD community. It was through one of these PF Surveys that we discovered that many people with PD don’t get the information they need about the disease following their diagnosis. In response, we developed our “Newly Diagnosed Kit,” a free, downloadable kit containing resources and information people with PD can draw on immediately after their diagnosis.

Finally, commit resources to your plan. Believe in your idea and don’t undersell it or your organization’s ability to get the job done. 

Adam: What is your best advice on building, leading, and managing teams?

John: To drive change, you must believe in your vision and convince others that your goal and the methods of achieving it are worth the time, energy, and resources. If you have an idea, build consensus first. If you power ahead alone, people will be more reluctant to collaborate with you or will search for workarounds. 

Adam: What is the single best piece of advice you have ever received? 

John: Don’t be afraid to ask lots of questions. And when you get the answers, listen with curiosity. You will be surprised how often you will hear something you did not expect. Listening is invaluable, and it will help you avoid mistakes. For example, as I mentioned earlier, the Parkinson’s Foundation frequently surveys the PD community so we can find out how to best meet their needs. Through one of these surveys, we discovered that many women with PD did not feel that their unique healthcare needs were being considered. (Women and men have different experiences with PD as they relate to risk, symptoms, treatment, and care.) In response, we developed the Women and PD initiative, the first national effort to address gender-specific disparities in PD research and care.

Adam: How can anyone pay it forward? 

John: Identify something that you’re passionate about, and then reach out to one of the leading organizations in that field and ask how you can help. Their answer might not be what you expect. It might be to serve as a volunteer or a fundraiser, or it might be to serve as a subject matter expert. If they don’t need your professional expertise, don’t be hurt. Be willing to help in another way. 

Of course, you can always make a donation. The generosity of Parkinson’s Foundation donors drives our research grants, educational programs, and our Centers of Excellence Network – the 47 designated medical centers around the globe that provide exceptional care to people living with and affected by Parkinson’s.

Adam: Is there anything else you would like to share?

With one million people living with Parkinson’s disease in the United States, there is a good chance that you know someone affected by the disease, whether they have it themselves or one of their loved ones does. Please encourage those people to take advantage of the resources that the Parkinson’s Foundation offers.


Adam Mendler is an entrepreneur, writer, speaker, educator, and nationally recognized authority on leadership. Adam is the creator and host of the business and leadership podcast Thirty Minute Mentors, where he goes one-on-one with America's most successful people - Fortune 500 CEOs, founders of household name companies, Hall of Fame and Olympic gold medal-winning athletes, political and military leaders - for intimate half-hour conversations each week. A top leadership speaker, Adam draws upon his insights building and leading businesses and interviewing hundreds of America's top leaders as a top keynote speaker to businesses, universities, and non-profit organizations. Adam has written extensively on leadership and related topics, having authored over 70 articles published in major media outlets including Forbes, Inc. and HuffPost, and has conducted more than 500 one on one interviews with America’s top leaders through his collective media projects. Adam teaches graduate-level courses on leadership at UCLA and is an advisor to numerous companies and leaders. A Los Angeles native, Adam is a lifelong Angels fan and an avid backgammon player.

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