Growing Together Through Strategic Partnership

Bay Area Lyme New Chapters Series

The natural law of things is that when there is a vacuum energy moves into that space to fill it up. The vacuum is then no longer a space or hole, it’s a place or an entity where energies from different locations come together and create new things.

So it is with the Lyme disease community: there are multiple nonprofit organizations across the country that have been founded to tackle complex issues in Lyme and tick-borne diseases, and as a result many people with Lyme—and their families—have stepped up to fill a vacuum and taken matters into their own hands.

In the Lyme disease ecosphere—just as in life—we are stronger, more effective, and more impactful when we join together and pull in the same direction, rather than fragmenting our efforts and competing for resources and attention. This was the simple conclusion that Bay Area Lyme Foundation and Project Lyme came to back in 2018, and the two foundations’ partnership has subsequently gone from strength to strength.

“Bay Area Lyme was looking for an East Coast partner to extend our organizational profile and boost our fundraising footprint in a collaborative spirit,” comments Linda Giampa, executive director of Bay Area Lyme Foundation. “We had a solid network back east and had conducted a number of speaker events in New York City. We thought that joining forces with the right East Coast group could provide us with important connections, amplify our fundraising, and raise our profile nationally.”

Previous to 2018, Bay Area Lyme had already had a few preliminary “let’s form a partnership” conversations with David Roth, Jennifer Weis Monsky, and Nan Kurzman who, at the time, were on the board of an established, successful awareness organization called the Tick-Borne Disease Alliance (TBDA). David, a Lyme patient, had told his story at one of BAL’s private New York speaker events in 2017, attracting over 75 people from the East Coast Lyme community. Roth was very clear that his group was seeking to support an existing Lyme disease research arm; he and his well-connected team wanted to focus their energies on education, awareness, and fund-raising and then funnel money into an active research entity. It made practical sense for them to identify a partner and leverage their energy with another Lyme organization.

Project Lyme turned out to be the perfect fit for both BAL and TBDA’s strategic goals on many levels. Founded by Heather Hearst in 2016, its mission was closely aligned with that of Bay Area Lyme and TBDA and there were many key philosophical agreements between the foundations. “I founded Project Lyme because I didn’t want anyone going through what I had gone through with this terrible disease,” explains Heather. Like many people with Lyme, her personal experiences and struggles were what galvanized her to set up her own nonprofit organization.

Diagnosed with Lyme in 1986 at age 14, Heather was extremely sick the summer before her freshman year of high school. Living in Madison, CT, which is a couple of towns over from the town of Lyme—the de facto epicenter of Lyme in the US—Heather was fortunate to get diagnosed and treated relatively quickly. However, she continued to have health problems, grappling with on-and-off unexplained illnesses. “I developed a healthy fear of ticks after that, so much so that I chose to move out to CA, my understanding at that time being that there were very few infected ticks in that part of the country.” Heather put her history with ticks behind her and focused on her life and career.

Heather’s life took a turn and she found herself back on the East Coast again, living in Maine, married with two small children. “I had forgotten my fear of ticks, but one day, I was nursing my young daughter and saw—to my absolute horror—that there was an engorged tick embedded in the crook of her arm. I took my daughter to the doctor and what shocked me was that nothing had changed. The doctor was blasé about her having been bitten by a tick, and I just thought ‘I cannot deal with this ignorance!’ As my children got older and started running around in the grass and the woods, I felt the same way a mother would feel watching their kids run into traffic. I knew I had to do something.”

Heather then launched Project Lyme to educate doctors, parents, and children about Lyme disease and help them learn how to prevent it. “From the beginning, I really wanted to help all of the truly desperate and sick people out there.” Heather started talking to other Lyme organizations and people involved not only in education and prevention, but in the scientific research that would help provide answers. “I needed someone who could take on fundraising and partnerships and figure out how to grow the organization and assist with the bigger challenges of this disease.”

The turning point for Heather came when she met David Roth, Jennifer Weis Monsky, and Nan Kurzman at a congressional briefing in Washington D.C. “When I met David, Jennifer and Nan, I knew that this was the group of people I had been waiting for. They were passionate, successful, smart, and had excellent connections. I knew that they could raise money and figure out the best organization to partner with on the research side of things.” It also helped that David Roth had already been exploring the partnership idea with Linda Giampa and her team. David, Jennifer, and Nan joined the board of Project Lyme, took over day-to-day operations, and then worked to formalize the relationship with Bay Area Lyme Foundation.

To launch their new partnership, Project Lyme and Bay Area Lyme Foundation held their inaugural joint gala at The Ziegfeld Ballroom in New York City in November 2018, attracting over 300 attendees. The success of the evening was immediately apparent: By hosting a joint event and leveraging each of their organization’s strengths, more than $500,000 of the total funds raised were earmarked specifically for Bay Area Lyme’s scientific research portfolio and 100% of these funds went directly to those projects.

“From the very beginning of when we joined the board of Project Lyme, we were trying to decide how to manage the scientific research component,” explains Jennifer Weis Monsky, board co-chair of Project Lyme. “We thought—why would we reinvent it when we had such a wonderful partner in Bay Area Lyme Foundation that already had the research granting and management expertise? When anybody comes to a nonprofit focused on disease, what they want are breakthroughs and developments in research and they care that their money is going to research. So we rely on Bay Area Lyme to direct our dollars accordingly.”

Since the inaugural NYC Lyme Gala in 2018, Project Lyme has continued to hold an annual East-Coast fundraising gathering (with the exception of 2021 due to Covid), sponsored in part by Bay Area Lyme. An amazing $4.5m has been raised by Project Lyme at their galas and the organizations continue to nurture their partnership with diligence and care. This year’s Project Lyme Gala was held April 11th, 2022, in-person at the Chelsea Piers and, despite the continuing challenges of the pandemic, raised over $1.3M, with $400,000 directed towards Bay Area Lyme and its research program.

Most important, however, is each organization’s role in ensuring that the science research engine providing answers to Lyme disease’s biggest questions continues being fueled and rolling forward. “The funds we raise together support the efforts of both Bay Area Lyme Foundation and Project Lyme,” adds Jennifer. “Our partnership works because both of our organizations care passionately about finding answers, but this way we are leveraging one another’s strengths and not competing for researchers’ time and resources. In fact, I think we have to move forward with even more collaboration as people in Lyme are really seeking faster timelines and better economies of scale in this collective search for answers.”

Although Heather Hearst is no longer involved with Project Lyme, she is extremely proud of the work the organization is doing and how it continues to raise awareness about Lyme and money in support of Bay Area Lyme’s research program.  “We still have a long way to go, but I am glad that my contribution to the field helped.”

Linda Giampa puts it simply: “Bay Area Lyme Foundation’s expertise in working with scientists and institutions to implement valuable research, develop impactful educational programs, and create novel initiatives such as the Lyme Disease Biobank, allows Project Lyme to focus on increasing awareness, patient advocacy and improving education. Together, our organizations—both founded by moms determined to make a difference—will one day make Lyme and other tick-borne diseases easy to diagnose and simple to cure.”

By partnering for the greater benefit of the Lyme community, Bay Area Lyme Foundation and Project Lyme embody how energies from our two coasts came together, filled a vacuum, and created a new, positive, and powerful momentum in the search for answers to Lyme’s toughest questions.