High Impact Philanthropy: Diane Blanchard Of Global Lyme Alliance On How To Leave A Lasting Legacy With A Successful & Effective Nonprofit Organization
An Interview with Karen Mangia
Trust in our process: We are good communicators and seek the advice and guidance of the Board. Our big decisions are joint, and that includes the science we support. Our Board trusts the process we have created to bring an annual slate of grant recommendations that consists of a tedious vetting process. It brings together some of the brightest researchers around the world who advise us on the science.
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 Diane Blanchard, Vice Chair, Global Lyme Alliance.
Diane Blanchard’s personal experience and professional background have made her a leader and spokesperson in the quest to conquer Lyme and tick-borne disease. After a career in business and marketing, Diane utilized her expertise to become Co-Founder of Lyme Research Alliance (LRA) in 1998. She served as Co-President of LRA until she became Vice Chair of the merged organization, Global Lyme Alliance (GLA), in 2015.
Diane has served as a strong voice and advocate within the Lyme community for nearly 20 years. As Co-President of LRA, Diane managed operations, development, and directed overall strategy. Today she continues to play an important role in supporting GLA’s mission and development.
She is an Advisory Board member of the Columbia Lyme and Tick-Borne Diseases Research Center, as well as the recipient of numerous honors. Diane received Greenwich Magazine’s “Light a Fire” Award in 2008 and was recognized by her community with the “YWCA Spirit of Greenwich Award” in 2013.
She received a bachelor’s degree in Economics from the State University of New York at Stony Brook and an M.B.A. in Marketing from Adelphi University.
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?
When I reflect on life, I can honestly say that what has mostly shaped my journey is how I have learned to navigate the challenges. Let’s call it “The Linda Effect.” While there have been many challenges in my life, the greatest was the automobile accident that nearly took my sister Linda’s young life and led her to a life of disability. At that time, I learned to trust my faith and accept that life is not perfect. Life is about how we accept challenges and remember to have gratitude for the wins, no matter how small they may be. In many ways, Linda has been my guiding star. She taught me that nothing is impossible and that every challenge presents an opportunity. I live in a constant state of hope for each day which was then and has always been inspired by my faith in God.
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.
One of the key ingredients to successful leadership is to have the backbone to do what is right and not necessarily what is easy. Many call this “integrity” that enables us to follow the inner voice. In the case of GLA, that voice has helped us stay on a clear path to help the patient community is constantly searching for meaningful research that will improve patient outcomes and empower the patient voice. We do not follow the crowd but instead create new opportunities, which are often followed in the research community. GLA seeks a cure for everyone suffering from Lyme and tick-borne diseases. We take the road less traveled, identifying innovative scientific opportunities and successfully navigating the process. We can do this because of our top-notch team of scientists who bridge the gap between the known science and the patient experience. Simply stated, we are thoughtful stewards of the funds entrusted to us to seek those opportunities with the most scientific merit.
Resiliency is the second ingredient in our ability to navigate the growing needs of our patient community. There have been many times when we needed to pivot from a position on research because it did not prove out. GLA remains a lean organization that allows us to be responsive to the market. Certainly, Covid made that need essential, and we did so masterfully. GLA has many highly skilled businesspeople on our Board who generously give their time and resources. GLA is managed like a for-profit business with strict guidelines. Our bottom line and profit are focused on delivering on our promise to our constituents to provide a catalyst to change the tick-borne disease landscape. GLA’s mission is to cure Lyme and other tick-borne diseases through innovative research, awareness, and empowering the patient voice.
Transparency is also essential to our community. They need to trust that we have their best interest at heart, and we do. We try to keep that line of communication open which enables us to be responsive to the community’s needs while focusing on our mission.
These three traits are our value system, and we seek those qualities in all members of our team and affiliates.
What’s the most interesting discovery you’ve made since you started leading your organization?
No one is expected to be the subject matter expert on everything. Learning to lean on those around us who have greater knowledge in any area of business is important in leading an organization. When Debbie Siciliano and I started GLA’s predecessor organization, we were both younger mothers who had left the professional workforce to raise our children. As we learned of the threat of Lyme disease and how it affected many members of our family and friends, we got together and started the organization in 1998. We quickly realized that many capable people had started non-profits in our community and began reaching out to them for advice. We continued to tap others to learn how to fundraise and build a non-profit. Our most significant discovery was simply that we were not expected to be experts on every aspect of building an organization. Still, as quick learners, we soaked in the information and translated it for the needs of our growing non-profit. It’s all about communication and working as a team.
Can you please tell our readers more about how you or your organization intends to make a significant social impact?
GLA intends to make a significant impact for the community by keeping our focus on our mission which will provide medical answers for everyone who suffers with Lyme and tick-borne diseases. This community is underserved in terms of financial support from the federal government. Lyme and tick-borne diseases can cause long-term disabling conditions that are misunderstood. Lyme and tick-borne disease (TBD) can be an invisible disease because patients may not appear ill, and unreliable tests may not be positive even when a patient is sick with Lyme. Therefore, patients are not given the support they require. Lyme disease does not discriminate; we are all at risk for this potentially chronic condition. We are working for everyone to find better medical solutions and patient support. To that end, I hope our research achievements can provide access to effective therapies regardless of the patient’s socioeconomic status.
What makes you feel passionate about this cause more than any other?
We are constantly pulling for the underdog. As such, you can’t possibly turn your back on this community. The level of suffering, isolation and personal shame for lacking the ability to thrive is immeasurable. I see it daily, and I know how this community is suffering. We need direct detection tests that are reliable and accurate so that doctors know when a patient is ill and when treatment is successful. It is unimaginable that a doctor today does not have the tools to treat and cure their patients. This community is suffering, and they need all hands on deck to make a real difference in their lives. The answers we seek must be affordable and accessible to everyone. Insurance companies should cover treatments that work for the patient population regardless of the medical controversy presented by Lyme and TBD’s. Science is evolving and remains unsettled.
Without naming names, could you share a story about an individual who benefitted from your initiatives?
Throughout these past 20 + years, there have been countless people who will attest to our support. Our Board seats many members who have passionately supported friends, family, and strangers. I wish I had a logbook to share the hundreds of thousands of people we have assisted. Keeping track of our success stories is not my focus. Instead, our mission is to provide this service to everyone who asks for it. We have Peer-to-Peer programs to support the patient journey and a Patient Referral program to guide people in finding Lyme literate physicians. We receive 400–500 calls per month, both domestic and international appeals for help. This increases spring through fall. I am honored to help anyone who reaches out. That is what makes this Board truly special. It is a personal goal for each of us to help families who reach out to us. When we don’t know an answer, we find someone else who might assist in keeping the early tradition of caring and sharing.
We all want to help and 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?
First, educate yourself about the dangers of a tick bite. Go to the GLA.org website and learn about ticks and how and where they thrive. Protect Yourself. Second, if you or a loved one has had unexplained medical issues, consider the possibility that you have had a tick bite. Keep a log of how you are feeling and try to reconstruct when you began to feel changes in your health. Bring the logbook with you to discuss details with your doctor. If your doctor is dismissive, find another who might be interested in becoming a medical detective. If you need help with this choice of physicians, visit the GLA website for Physician Referrals in your area. Lastly, if you can, please donate to support our work, sign up for our blogs, newsletters, and social media…stay involved with us.
Based on your experience, what are the “5 Things You Need To Create A Successful & Effective Nonprofit That Leaves A Lasting Legacy?”
Board diversity of backgrounds with the consistency of shared values: Identify a diverse Board of passionate people. From our earliest days, our organization was highly effective in reaching people and bringing in supporters. One of the first Board members, Dana McAvity has continued to be involved in the organization, doing outreach to assist families needing help and finding donors willing to support the mission. She is highly effective in other areas of Board work yet chooses to continue to work alongside us to achieve our mission. We have consistently kept long-term membership because we decided to work with people who share our value system.
Seek compassionate, positive-minded individuals: Lyme and tick-borne diseases are challenging. We often find ourselves struggling to keep our families well and able to afford the myriad of untested trial treatments to help them and ourselves in some cases. You can easily find yourself battling issues with doctors, schools, insurance companies, and family and friends. This is truly difficult, and the challenge is to remain positive in the face of adversity. Debbie Siciliano and I have had a long-standing requirement of our membership, and we must stay positive. We work as a team, sharing, offering support, and caring.
Trust in our process: We are good communicators and seek the advice and guidance of the Board. Our big decisions are joint, and that includes the science we support. Our Board trusts the process we have created to bring an annual slate of grant recommendations that consists of a tedious vetting process. It brings together some of the brightest researchers around the world who advise us on the science.
A deep bench that includes young professionals: We have an Ambassador Program that includes people of many ages to bring forth the GLA message across the country and beyond. This diverse group includes many young people who have battled with the disease and who share our passion and value system. It is also a feeder program to the greater Board. This program enables us to work with younger people with new ideas and skills while sharing our experiences. Some members are preparing for retirement, making this process critical to a smooth and consistent transition.
Selection of top-level employees: GLA’s guiding principles (value system) is embedded in our hiring process. We have hired a diverse group of employees who share our goals and values and bring tremendous professional resources and empathy. Each employee understands that we operate in a fiscally responsible manner while adhering to our mission and Strategic Plan. From the very beginning, we’ve recognized the importance of good governance and work toward that goal to ensure that our donors are confident in our management of their generosity. The community has many needs but staying true to the mission is fundamental to our success. As Debbie always says, “keep your eyes on the prize!”
How has the pandemic changed your definition of success?
Pre-pandemic, donations were straightforward and anticipated. We had a system that worked to fund our important work. During the pandemic, we found the need to cut back on overhead and refocus as a leaner organization. We reduced staff and began to refocus on new funding sources to ensure sustainability.
How do you get inspired after an inevitable setback?
We have a tremendous support network within the Board. If we have a setback, together, we work on solutions and establish alternative means of achieving our goals. We also understand when a Board member is compromised by illness and move quickly and compassionately to provide the assistance they need. We know that family comes first, and many of us have had to step back during times of family crisis. Yet we know this Board stands with us through the tough times, as well as through the successful times.
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. 🙂
Elon Musk, David Freidberg
You’re doing important work. How can our readers follow your progress online?
Visit GLA.org for research updates, patient services, blogs, and personal stories. Or you can find us on Facebook, Instagram, Twitter, or LinkedIn.
Thank you for a meaningful conversation. We wish you continued success with your mission.
About The Interviewer: Karen Mangia is one of the most sought-after keynote speakers in the world, sharing her thought leadership with over 10,000 organizations during the course of her career. As Vice President of Customer and Market Insights at Salesforce, she helps individuals and organizations define, design and deliver the future. Discover her proven strategies to access your own success in her fourth book Success from Anywhere and by connecting with her on LinkedIn and Twitter.
High Impact Philanthropy: Diane Blanchard Of Global Lyme Alliance On How To Leave A Lasting Legacy… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.