It starts with a clear vision for what you are trying to achieve and how you will get there. I’ve already shared how important my experience with the CF Foundation was in my development as a leader, and we have adopted that same approach at the Parkinson’s Foundation.
For someone who wants to set aside money to establish a Philanthropic Foundation or Fund, what does it take to make sure your resources are being impactful and truly effective? In this interview series, called “How To Create Philanthropy That Leaves a Lasting Legacy” we are visiting with founders of Philanthropic Foundations, Charitable Organizations, and Non Profit Organizations, to talk about the steps they took to create sustainable success.
As a part of this series, I had the pleasure of interviewing John L. Lehr.
As president and CEO of the Parkinson’s Foundation, John L Lehr guides the organization’s strategy of mission programs and resources that make life better for people with Parkinson’s disease. He works to expand the Foundation’s reach, research initiatives and presence, while working to improve health equity among the Parkinson’s community and the underserved. He ensures that all Foundation programs and resources aim to improve care and advance research toward a cure.
Thank you for making time to visit with us about a ‘top of mind’ topic. Our readers would like to get to know you a bit better. Can you please tell us about one or two life experiences that most shaped who you are today?
The first two that come to mind are my experiences with the Peace Corps and the Cystic Fibrosis (CF) Foundation. I joined the Peace Corps in the early 1990s, serving in Sri Lanka where I taught English and promoted small business development. During my time there, I observed that Sri Lankans are remarkable and brilliant people that needed access to capital resources to make sustainable changes in their quality of life. From that experience, I gained an understanding of how crucial funding is for transforming ideas into action.
As my career progressed, I had the opportunity to work for the CF Foundation during a transformational period for that organization. The Foundation implemented a plan to address the challenges of CF, a devastating lung disease that affects about 70,000 people worldwide. The first phase of that plan focused on investing in research into the causes and basic biology of the disease. The Foundation then built on those investments to develop therapies targeting symptoms, and ultimately in therapies targeting the underlying causes. The result was a range of therapies that helped transform CF from an ultimately fatal pediatric disease to a manageable chronic disease.
Through that process, I saw firsthand that pairing innovative ideas with appropriate funding can lead to life-changing discoveries and breakthroughs. Although Parkinson’s disease (PD) is considerably more complex, I believe the same approach can be applied with success, particularly with a strategic investment of capital.
You are a successful leader. Which three character traits do you think were most instrumental to your success? We would love to hear a few stories or examples.
First, I would say success ultimately comes from having a vision for what you want to achieve. That vision becomes essential to guiding both the short- and long-term decisions leaders are required to make. At the Parkinson’s Foundation, our vision includes both improving the quality of life for those impacted by the disease and identifying the mechanisms behind the disease that will enable a cure. Every decision we make supports that vision.
The second is recognizing and trusting the talent around you. We have built a great team here at the Parkinson’s Foundation and that team has been fundamental to our success. This does not just include the people that work at the Foundation. It also includes the many volunteers that support our programs and the talented researchers working in the field.
Finally, being positive and optimistic are essential. If you are not demonstrating optimism and confidence, others will question the plan. We have had five years of tremendous growth at the Parkinson’s Foundation, and I believe this is a result of our clear vision to improve the lives of all those living with and affected by this disease and consistently maintain a positive attitude as we address the challenges of this complex disease.
What’s the most interesting discovery you’ve made since you started leading your organization?
I am continually impressed by the optimism and resiliency of people living with PD. This is a very tough disease physically and emotionally, and yet people with PD get up every day and live their best lives. Not every day goes as planned, and some days are better than others, but the fight for a good life is truly inspiring.
Can you please tell our readers more about how you or your organization intends to make a significant social impact?
The Parkinson’s Foundation is here to make the lives of all those living with and affected by PD better today, while we search for a cure. Our education, care and research programs are all designed to put people with PD first. Through our educational programs, we provide people with PD the information and resources they need to manage their daily lives. Our care program is aimed at ensuring that people with PD receive the highest quality care possible. And our research programs are designed to advance science so that we can ultimately cure this disease.
One program that we are proud of is our Community Grants Program, which supports community-based education and outreach that address unmet needs in the PD community. Our goal is to provide up to 2 million dollars worth of these local grants each year.
What makes you feel passionate about this cause more than any other?
The more you know about Parkinson’s disease and its impact, the easier it is to be passionate about helping the people affected. For me, knowing so many people living with this difficult disease propels me forward every day. I want the Foundation to find ways to ease their daily burdens and provide hope that we will solve this disease once and for all.
Without naming names, could you share a story about an individual who benefitted from your initiatives?
When COVID hit, we launched PD Health @ Home, which provides daily virtual educational programming to keep people connected and focused on health and wellness. Born of necessity, it is now helping tens of thousands of people each week with programming on mindfulness, health, and fitness. The program has had a reach and impact beyond our expectations and has become an important component of our outreach. I have talked to so many people who have benefitted from this program, including one of our lead volunteers who said PD Health @ Home has been a lifeline for her during this difficult period of social isolation.
We all want to help and to live a life of purpose. What are three actions anyone could take to help address the root cause of the problem you’re trying to solve?
There are so many ways to get involved, whether you are a person living with PD, a care partner to someone living with PD, or someone unaffected who wants to support people with the disease. Volunteering at one of our many educational and fundraising events is one great way to get involved. You can also join a support group or serve as an ambassador for one of our programs. Anyone interested in getting involved is invited to visit Parkinson.org/Get-Involved.
For those who are living with PD, one impactful way to get involved is by participating in PD GENEration: Mapping the Future of Parkinson’s Disease, a first-of-its-kind national initiative that provides genetic testing for clinically relevant PD-related genes at no cost in English and Spanish for people with PD. The goal of PD GENEration is to leverage genetics to help us uncover what is responsible for slowing or stopping the progression of PD, and this testing can help people with PD and clinicians identify whether they may qualify for enrollment in future clinical trials.
Based on your experience, what are the “5 Things You Need To Create A Successful & Effective Nonprofit That Leaves A Lasting Legacy?” Please share a story or example for each.
This question could be the subject of a book, but I’ll try and be as succinct as possible.
- It starts with a clear vision for what you are trying to achieve and how you will get there. I’ve already shared how important my experience with the CF Foundation was in my development as a leader, and we have adopted that same approach at the Parkinson’s Foundation.
- Next is ensuring programs are effective and meaningful to constituents. Ultimately, if you are not helping the people you are trying to help, you are not going to be successful. As an example, I would point to our PD GENEration program, which addressed a major need in our community by helping to identify people with a genetic form of PD who can later enroll in clinical trials.
- Programs like PD GENEration depend on messaging that inspires others to get involved and give. We have launched our Reach Further Campaign to let people know how their funds are used to advance research, care, and outreach.
- Creating a collaborative and results-oriented culture is also essential. An internal culture that inspires and rewards hard work and dedication can make the difference between success and failure for a non-profit. A good example of the culture we have created at the Parkinson’s Foundation can be seen at our monthly all-staff meetings, in which staff is encouraged to share “shoutouts” for others who have been particularly helpful in the previous month.
- Finally, continuous strategic planning is required to adapt to changing conditions, build on success and learn from experience. We are in our second strategic plan and have found that reviewing and assessing progress continuously helps ensure we are achieving our goals.
How has the pandemic changed your definition of success?
It has not. We still want to improve the lives of people living with PD while making advances in science. Those are universal goals, and we measure our success by them. Despite COVID, we are continuing our growth, with last year being our best in terms of mission ratio and revenues raised. Of course, we are mindful of external events and factors and adjust accordingly when necessary.
How do you get inspired after an inevitable setback?
There are always going to be setbacks when dealing with a complex and debilitating disease like PD, but we simply can’t allow ourselves to be deterred by them. That is why it is so important to stay optimistic and to celebrate success. As I mentioned, I also take a great deal of inspiration from the resiliency and strength demonstrated daily by those living with the disease.
We are very blessed that very prominent leaders read this column. Is there a person in the world who you would like to talk to, to share the idea behind your non-profit? He, she, or they might just see this, especially if we tag them. 🙂
I would be delighted to talk with anyone interested in our programs to make life better for all those living with and affected by PD and to advance science toward a cure. In particular, I would be pleased to talk with anyone looking to help advance meaningful programs that help people with PD.
You’re doing important work. How can our readers follow your progress online?
Visiting Parkinson.org is one of the best ways to keep up with the Foundation’s work, along with our social channels on Facebook, Instagram, Twitter, YouTube, LinkedIn, and my personal LinkedIn page.
Thank you for a meaningful conversation. We wish you continued success with your mission.