Taking on Lyme Disease Together with Generation Lyme
Hello humans! I’ve got a great one today, I’d like to introduce you to Brooke R. Stoddard, Co-Founder of Generation Lyme. Without further ado, let’s get started with the interview.
SPIFFY: Hi Brooke, thanks for the interview today! What challenge are you addressing?
Brooke: Oh don’t worry, Spiffy, the pleasure is mine. Generation Lyme is a community to empower young people facing Lyme disease. We pursue this mission in two ways. First, we invite Lyme disease patients to tell their stories authentically on our Instagram account (@generation_lyme). Second, we host three Zoom Meet-Ups every week for Lyme disease patients around the country, to help them meet and inspire each other.
SPIFFY: And what prompted you to start this?
Brooke: Ten years ago, I contracted Lyme disease. I experienced a wide range of difficult symptoms. It took four years to get diagnosed, and I have been treating it for six years. Thankfully, today I am about 95% better. But my journey toward better health was stressful, uncertain, and lonely. I co-founded Generation Lyme for exactly this reason – to inspire and support other people through this difficult process.
SPIFFY: Entrepreneurs like you are great at bringing communities together. What are you doing to make sure it’s a community built on equity?
Brooke: We have always aspired to be the most welcoming and inclusive community for young Lyme disease patients. My co-founders and I often lament the fact that Lyme disease non-profit organizations are predominantly white, including ours. One way in which we are working toward a more equitable world is by fighting systemic racism in medicine, by elevating the voices and stories of Black, Indigenous, and people of color – particularly Black – patients with Lyme disease.
SPIFFY: Community programs can be a big help for health equity, what milestones have you hit recently?
Brooke: In June, we hosted Generation Lyme Meet-Up #40 this year. Over 450 people attended these Meet-Ups, which are safe spaces where Lyme disease patients can meet each other, ask questions, share their stories, and discuss the experience of Lyme disease. Meet-Ups are through Zoom, so anyone can join, no matter where they live. I love Generation Lyme Meet-Ups because they make me feel encouraged, inspired, and hopeful. Our impact is helping other Lyme disease patients feel this way, too.
Above: A recent Generation Lyme Meet-Up. Image courtesy of Brooke Stoddard.
SPIFFY: What a success! Could you tell me about the journey to get to that point?
Brooke: In our first year, my co-founders and I struggled with momentum. We were working on projects that didn’t excite us; we lost interest and failed to move projects forward. But, we hit our stride when we focused on projects we loved. As an example, I love hosting Meet-Ups, so I focus on building that initiative. For another co-founder, Meet-Ups aren’t really his thing, but he loves to focus on social media and messaging. When each co-founder pursues a passion project, our organization thrives.
SPIFFY: I totally agree, have you learned anything unexpected from those Meet-Ups?
Brooke: Recently, Generation Lyme hosted a Meet-Up for Moms & Dads who have children with Lyme disease. I learned how much parents struggle to watch their kids deal with the myriad symptoms of Lyme disease, and how hard they work to navigate complex treatment options, health insurance, and multiple doctors’ offices. The Meet-Up was incredibly moving and emotional. I realized that in addition to supporting young people with Lyme disease, there is so much that Generation Lyme can do to help parents, too.
A Spiffy PSA: Did you know?! Every year, approximately 300,000 Americans contract Lyme disease. That makes Lyme disease the fastest growing vector-borne disease in the United States. If you thought that Lyme disease was easily treatable with two weeks of antibiotics, in many cases, that is simply false. :( Many Lyme disease patients suffer symptoms for years, decades, or permanently, despite constant treatment. If you or anyone you know suffers from Lyme disease, you are welcome to refer them to Generation Lyme. There’s always a seat at the (virtual) table!
Brooke Stoddard is the co-founder of Generation Lyme, a community to empower young people facing Lyme disease. In addition to his non-profit work, he is a Director at Grayscale Investments, a global leader in digital currency asset management.