Generation Lyme is a 501(c)(3) Nonprofit Organization
We are thrilled to announce a milestone in our mission to empower Lyme disease patients and supporters everywhere:
In 2023, Generation Lyme became a 501(c)(3) nonprofit organization.
What We Do
At Generation Lyme, we provide a space where Lyme patients and loved ones can feel welcome, safe, supported, and inspired. We aim to empower patients and families by bringing them together and assuring them they’re not alone. Here's how:
Meet-Ups: Generation Lyme hosts online Meet-Ups several times each week for patients, parents, and supporters.
Stories & Podcast: We share patient stories on our social media platforms and The Generation Lyme Podcast to show others what it's like to live with Lyme and help our community feel seen and connected.
Resources for Patients & Supporters: We compile critical resources, including financial programs, housing directories, physician search options, and blogs. We also offer robust resources for supporters—parents, caregivers, and other loved ones of Lyme patients—to help them navigate their experiences, get the support they need, and get tips on how to be there for the patients in their lives.
Advocacy: We also collaborate with our community and partner organizations to raise awareness and advocate for much-needed long-term change.
Events: We host community events like annual winter parties, keep our Meet-Ups consistent throughout the year, and celebrate Gen Lyme Day, a new holiday to recognize the people of the Lyme community. We do all this because we know firsthand how important it is to have something to look forward to—especially while you’re going through the worst of Lyme.
Our Meet-Ups are support groups for anyone looking to ask questions, share experiences, or just be around people who understand. As of this announcement, our Meet-Ups, hosted by incredible community members, have served over 10,000 participants worldwide.
We care about maintaining this space to uplift each other. People in our community too often get silenced and sidelined—especially when they are forced to spend all their efforts advocating just to stay alive. But they matter. We matter. These voices and stories matter. Their experiences need to be heard and validated so that their lives can be improved.
We consistently tell people in our community, "We believe you. We hear you. We value you. We're so glad you're here." Because it's true, we do, and we know what it's like to need to hear it.
Who We Are
Generation Lyme is an organization of people who care deeply about making life better for everyone who has been or may be impacted by Lyme disease. Lyme and other tick-borne diseases have changed our lives, and we’re passionate about creating a safe space for patients and supporters because we’ve all personally experienced the need for it.
We know how vital community is when dealing with Lyme. We’re not mental health experts, but we are here to listen, hold space, and support people going through something so few truly understand.
We also understand how underserved and unseen the tick-borne disease community has been for years, and we are determined to help change that.
Our Meet-Up hosts and other volunteers are members of this community who want to help, whether by holding space for others, helping to keep things organized, uplifting the community, spreading the word, serving as that empathetic ear so many of us needed and lacked when we were going through it, or creating spaces for more conversations.
Many of our Meet-Up hosts have created Meet-Ups specifically for those in our community who have historically been the most under-served, enabling conversations in safe spaces where individuals facing similar challenges can share their experiences, exchange information, and provide mutual support.
To learn more about us, view the Team page on our website.
Why Generation Lyme Exists
Generation Lyme exists to combat the harmful isolation that frequently accompanies Lyme and other tick-borne disease experiences. No one with Lyme should go through it alone—and no one has to.
Generation Lyme prioritizes creating a low-pressure community where people can feel seen and heard, welcome, valued, and supported, where they can be themselves and appreciated for it.
Gen Lyme is also committed to providing free resources. The Lyme and tick-borne disease community is both underserved and already financially strained by limited insurance coverage for medical care. In most spaces, financial and other privileges present enormous barriers to health and even quality of life while managing symptoms. We want to create a space with as much equity and access as possible—and we are constantly working to improve these features of our services.
Without systemic solutions for Lyme disease, patients are forced to navigate everything independently. Generation Lyme provides an essential support system. Patients and supporters can come to this space to ask questions (and get answers), share what’s on their minds, listen to others’ stories, and feel connected, inspired, and worthy.
Gen Lyme is a place to get help, make friends, and have something to look forward to—whether you’re stuck in bed, worried about a loved one, or even feeling better.
“The support I received from this group helped save my life.”
— Grace, Community Member & Meet-Up Host
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Tick-borne disease symptoms are often complex and overwhelming, and they can be very challenging for people (especially those who don’t have it) to understand. People may lose jobs, hobbies, relationships, friends, families, and abilities they once relied on.
Some of the most common and destructive effects of Lyme, aside from its potentially extreme, often disabling, and occasionally deadly symptoms, can be psychological and emotional trauma and severe isolation. These, too, can critically impair mental and physical health.
It’s incredibly hard when you’re a patient, and the people around you don't—or won’t—understand what’s going on with you.
Over the years, our community members have described the experience in heartbreaking ways:
“Lyme is often viciously lonely; most people in our lives don’t understand how sick we are.”
“Instead of love and support, most Lyme patients get told they are crazy over and over.”
“One of the hardest things about being chronically ill and living with Lyme disease is that most people find what you’re going through incomprehensible.”
“It’s life-threatening but completely misunderstood, so dealing with it is extremely alienating. It’s one of the loneliest things a person can go through.”
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Lyme disease, caused by the bacterium Borrelia burgdorferi and transmitted through the bite of infected ticks, impacts thousands of people each year. It is the fastest-growing vector-borne disease in the United States, with nearly half a million new cases each year. Its symptoms can be debilitating, ranging from flu-like symptoms to severe neurological and cardiac complications. Yet, Lyme disease is often underreported, underdiagnosed, and misdiagnosed.
Many patients with Lyme disease do not see a telltale erythema migrans rash or recall a tick bite. Unreliable testing and poor understanding by doctors often leave these patients in confusion, isolation, desperation, and a rapidly worsening health emergency.
When a Lyme disease diagnosis is missed or delayed, the illness can progress to late-stage Lyme, in which ongoing, widespread, multi-systemic symptoms are present. Lyme disease has also been proven to persist (survive) against antibiotic treatment. This can result in a long-term illness with recurrent symptoms that can affect the cardiac and nervous systems and even cause death.
In addition to Borrelia, a tick can transmit other contagions, commonly referred to as co-infections—many of which can cause debilitating symptoms or death. Lyme itself is challenging to diagnose because of imperfect diagnostic criteria, inaccurate testing, and symptoms that vary from person to person. Co-infections can compound the difficulty.
No cure currently exists for Lyme disease. Testing is unreliable, as current diagnostics miss up to 60% of cases. Common treatments for acute cases work for only about 85% of cases and are insufficient for long-term cases. Just this October, the CDC acknowledged that Lyme can cause chronic symptoms—something patients have known and been dismissed over for years. Even when treatment options exist, insurance often doesn't cover the care. Many go into debt or choose not to treat because they cannot afford it.
What’s Next
Good news is on the horizon. Even recently, the CDC updated its stance on the chronic symptoms of Lyme disease. Federal funding for Lyme disease has tripled in the past few years. New Lyme education legislation has been passed to help prevent more people from getting sick.
There is a long way to go, and for a community that has been hurt for a long time and lacks immediate solutions, we recognize that it’s hard to get excited about solutions that don’t take away current pain or financial burdens. While we’re excited about the future, we’re always aware of the needs on the front lines of the Lyme problem and the pain people are dealing with today.
That’s why we’re here: To be there for people who need people right now.
Because being together helps.
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Generation Lyme began as an initiative of Project Lyme, a 501(c)3 nonprofit dedicated to Lyme disease research, education, and advocacy. In 2023, Generation Lyme became an independent 501(c)3 nonprofit organization. We are immensely appreciative of Project Lyme for their partnership over the years.
We thank everyone who has been part of this journey. Thank you to our incredibly empathetic and dedicated Meet-Up hosts and Admin volunteers, past and present, who have changed countless lives for the better, uplifted us all, and helped bring Generation Lyme to where we are today. Thank you to every single person who has bravely shared their Lyme story.
To our community everywhere: Thank you for being here. Thank you for being you. You make Generation Lyme what it is.
If Lyme disease has impacted your life, there’s a place for you at Generation Lyme.
