Non-Profit Leadership Lessons

I recently went one on one with John L. Lehr, President and Chief Executive Officer of the Parkinson's Foundation. John played a pivotal role in merging two legacy Parkinson’s organizations into the Parkinson’s Foundation in 2017, and since then, the Foundation has nearly doubled its revenue to $35 million. Under John’s leadership, the Foundation earned a 4-star charity rating from Charity Navigator and a Platinum Seal of Transparency from GuideStar.

Adam: Thanks again for taking the time to share your advice. First things first, though, I am sure readers would love to learn more about you. How did you get here? What experiences, failures, setbacks or challenges have been most instrumental to your growth?

John: When I was in college, I never thought I would have the job I have now. I studied history at Villanova University, then earned my Master’s, intending to get my Ph.D. and teach. I eventually changed my mind and looked to a career overseas. I applied to the Peace Corps, and served in Sri Lanka in the early 1990s, teaching English and promoting small business development. During my time in Sri Lanka I saw how incredibly talented the people were. What they lacked were resources and access to capital to fully develop their county. The need to match talent and great ideas with resources has stayed with me throughout my career. Great people and ideas need funding to get off the ground.  

After the Peace Corps, I worked in medical research at the University of Pennsylvania, then in nonprofit fundraising, and then in nonprofit management. I have spent nearly my entire career in healthcare, working primarily in the disease-specific space.

A transformational moment occurred when I went to work for the Cystic Fibrosis Foundation (CFF) in 2004. Cystic Fibrosis is a rare pulmonary disease that ultimately destroys the lungs. CFF had made tremendous progress in understanding the basic science and controlling the symptoms of the disease, but was looking for a more permanent medical solution so people could live long and full lives. That required a significant investment in promising therapeutics research. During a five-year period, I helped CFF raise $175 million to accelerate research that led to two new life-prolonging drugs. These drugs completely transformed CF from an ultimately fatal disease to a livable disease. That success further convinced me that pairing innovative ideas with resources can lead to amazing discoveries and breakthroughs. I think the same success can be achieved in Parkinson’s disease (PD).

I became CEO of the Parkinson’s Foundation shortly after two PD nonprofits merged in 2017. In the relatively short time since the merger, we have seen tremendous investment in the Parkinson’s Foundation; that investment has allowed us to grow exponentially and provide even more research grants, resources, care and education for people with the disease.

One of my lessons learned as a CEO is that you cannot drive change without convincing others that your vision and approach are worthwhile. If you have an idea, you have to build consensus first. If you don’t, people will be reluctant to collaborate with you or find work-arounds.  Another lesson learned is to listen to your community. As a consultant, I saw the “top down” approach fail many times. Never assume you know what the community wants or needs. Ask them over and over. You will often be surprised by what you hear. Constituent or patient engagement is an area where the Parkinson’s Foundation has been a leader for a long time. In all our programs we incorporate the views of our community in planning and implementation, working with our patient advisory groups like People with Parkinson’s Advisory Council (PPAC) and Parkinson’s Advocates in Research (PAIR).   

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: The most important component of being a leader is to have a vision for what you want to do. You can’t just be a manager, solving daily problems. You have to have a vision to accomplish great things. If you look at leaders across all industries, those who have a clear vision are often the most successful, provided they have a well-developed plan and a great team working with them.

My advice to anyone seeking a leadership role at an organization is to identify other leaders you admire and model their behavior. You’ll learn so much about how they manage through large issues and small.

Learning from your mistakes is also crucial. Often people find themselves in situations where there is no playbook or roadmap, and they have to innovate and improvise. In those situations, don’t be afraid to take risks or to make mistakes. Be willing to learn from them, and don’t point fingers when things don’t go as expected.  Build bumps into your plan, and tell your team that things may not go as expected. They will appreciate the candor, and will be more willing to problem solve along with you.

Adam: What are your best leadership lessons from leading the Parkinson’s Foundation? 

John: The nonprofit space is ever changing, and is influenced by many variables, some which you can control and some which you cannot. Because of that, it is important to continually test your baseline assumptions.  “Is the situation changing?” “Are we still having maximum impact?”  “Are we spending resources effectively?” Then see if you core functional areas—programs, fundraising, communications, operations—are aligning with those assumptions. If not, it may be time to adjust. 

An organization must be flexible and be able to adapt quickly. If you’re too rigid, you’re going to miss opportunities in good times and bad. The current COVID-19 crisis presents a good illustration of this. In the early stages of the pandemic, the Parkinson’s Foundation pivoted quickly from actual events to virtual events, both in fundraising and mission programs. We retooled our signature fundraising walk, Moving Day, which had a spring calendar of 26 events in locations across the county, to a one-day event held virtually. Although it did not raise as much money as we initially planned for our spring season, we were able to raise much needed revenue, satisfy our sponsors, and most importantly, provide our community with an impactful virtual experience. We also launched a new virtual program called PD Health @ HOME to engage the community through daily activities around mindfulness, wellness and exercise. This helps our PD community stay active, which is critical to their physical and mental well-being, and informed while staying at home. 

Adam: What are your best tips on leading a non-profit organization?

John: Be very clear about your vision and mission objectives, and make sure your revenue is sufficient to accomplish your goals. There are many great ideas to advance mission, but they need resources. Revenue generation is critical for all nonprofits, and every CEO should be actively and continually fundraising.

In my view, nonprofits that have a harmonious relationship between their board and management are the most successful. At the Parkinson’s Foundation, our board plays a leading role in setting the vision and mission. Management is a partner in that, and is also expected to execute the plan, ensure impact and report outcomes to the board and community. 

Adam: More broadly, what are three best tips applicable to entrepreneurs, executives and civic leaders?

John: First, have a few bold and achievable initiatives. Don’t play small! Our PD GENEration initiative is a great example of that. We knew genetics was a new frontier in the fight against PD, and that we had to screen tens of thousands of people to have useful data.  There was no road map to guide us, so we put together a great team, began planning using outside expertise, and committed appropriate resources to get the initiative off the ground. We have just completed the pilot phase to great success, and are now providing free genetic testing and counseling for people with Parkinson’s disease, and are ready for expansion.

Second, take the time to listen to your community and understand what needs to be done. Then set stretch goals, and have a plan to execute and meet those goals. For example, we frequently survey members of the PD community about their needs. It was through a survey that we found that many people didn’t get the information they needed about the disease following diagnosis. It was our goal to ensure that people recently diagnosed with PD had resources and information they could draw upon immediately, so we created a free, downloadable “Newly Diagnosed” kit using their input.

Finally, commit the resources to that plan. Don’t undersell your idea or your organization’s ability to get the job done.

Adam: What is your best advice on fundraising?

John: With fundraising, you have to have a mission that people care about, and a clear plan to deliver.  Ultimately, all fundraising is about relationships. You need to ask why a person or company should invest in your nonprofit, your initiative or your project. Donors have to see that their gift will lead to results. To that point, when talking with a donor, I balance the human component with the investment component. Donors want to know that you care and that you are going to use their money wisely and effectively.    

Adam: What advice do you have for those interested in working for a non-profit?

John: Be passionate, be committed and know it’s not easy. Nonprofit communities have many needs and people in those communities expect results. Be prepared to roll up your sleeves. On our team, everyone has been up early on a Saturday or Sunday to help with an event, from setting up tables, to carrying boxes, to cleaning up after the event.

If you are considering working for a nonprofit, decide what you want to do and how you want to be helpful. Challenge yourself to learn as much about the nonprofit as possible. Be curious about the organization, and take time to understand the programs, messaging, operations, and fundraising aspects. Then find out how you can make the greatest impact for the organization.

Finally, if you’re interested in working for a nonprofit, keep an eye out for lists of best places to work. The Parkinson’s Foundation was recently named one of the best nonprofits to work for by the Nonprofit Times. I believe this is because we have built a positive, open, and supportive culture.  Look for organizations that have a similar culture. You will thrive in those cultures.

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

John: Ask questions and listen with curiosity. You may not always hear what you want or expect, but you will find the exercise invaluable, and it will help you avoid future mistakes if you take it to heart. We are continually surveying the PD community and then working to address their needs. For example, by talking with our community we learned that many women with PD did not think their unique health care needs were being addressed. So we developed the Women and PD program to better understand and address those needs. We also learned that care partners face considerable challenges caring for a person with PD, and that can have adverse effects for everyone involved. In response, we launched the bi-annual Care Partner Summit to address the needs of the primary care partner, as well as the whole family.

Adam: What can anyone do to pay it forward?

John: If you care about something, call the leading organization in that field and ask how you can help. It may be different from what you expect. It may be as a connector, fundraiser, a subject matter expert or a volunteer. Don’t presume that they need your professional expertise; they may already have that in-house or on the board. If they don’t need your professional expertise, be willing to help in another way. 

If nothing else, make a donation. For the Parkinson’s Foundation, the generosity of our donors drives our research grants, educational programs, and our Centers of Excellence Network - the 47 designated medical centers around the world that provide expert care to people living with and affected by Parkinson’s.

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

John: I’m incredibly fortunate to work with an amazing team at the Parkinson’s Foundation on behalf of such a wonderful community. I’d encourage anyone to learn more about us at Parkinson.org or call our free Helpline at 1-800-4PD-INFO.