Still Being Brave: A LymeBrave Foundation Update

Dear Lyme Friends, 

We've been quiet for a while.

I know some of you have been wondering where we've been, why we're not posting as much, and how LymeBrave Foundation is continuing to support the Lyme disease community. I'm here to answer all of those questions and more... 

Lyme Disease Awareness Month begins today. This month is also, coincidentally, the 13th anniversary of when I was first diagnosed with Lyme and company.

Thirteen years.

It's so hard for me to go back to that warm spring day, sitting in my doctor's office for the first time, because it feels like a lifetime ago. Thirteen years is almost as long as I went undiagnosed--a disheartening reality that affects too many of us.

So much has happened between now and then, including LymeBrave being born from a desire to make sure that no one feels alone in what they're going through. I was knee-deep in the middle of my first relapse when I officially founded LymeBrave in 2017. In so many ways, that relapse was harder than the initial diagnosis. But creating LymeBrave turned pain into purpose, and over the years, as I began to heal, I turned that purpose of helping others into passion.

It just looks a little different than before.

For the past decade, I've been a vocal advocate for the Lyme disease community--a community that is too often ignored and neglected. A community that is too often seen suffering and struggling with little support for the emotional toll that chronic illness can take.

This has been my passion--to remind you that you're never alone. Over the years, I've written books, given speeches, campaigned on behalf of fellow Lyme-related non-profits, and eventually founded my own in LymeBrave Foundation. 

I'm still here--albeit in a little bit of a different capacity--still helping others through their journeys, answering emails and messages at all hours of the night because I know what it's like to feel lost in the darkness whether from a chronic illness or other life experiences. 

And I want you to know that LymeBrave is still here, too. 

LymeBrave will always be here. 

Over the past few years, you may have noticed we've been more quiet than usual. That’s because I needed to step away and focus on my own healing—not just physically, but emotionally, mentally, and spiritually. 

Living with illness for so long took a toll on every part of me, and I realized I couldn’t keep pouring from an empty cup. I had to learn how to hold space for others without losing myself in the process. And as I did that, something shifted. My purpose began to grow. 

I still support the Lyme community with all my heart, but I’ve also expanded to help others through different kinds of healing journeys—because illness isn’t the only thing that breaks us, and healing doesn’t look the same for everyone. 

Still, it all began here. And it’s all still rooted in the same mission: to help people feel less alone in the dark.

As a result of this shift, I've had to let go of a lot of dreams and visions surrounding our foundation, including:

• LymeLine: A helpline made up of patients and caregivers with Lyme experience to support those struggling 

• LymeHouse: A transition center so patients can spend time focusing solely on their recovery and slowly transition back into their everyday life and workforce

These were big dreams that I still dearly wish to see come true, but we're a small group with one person (myself) at the helm. Having been in recovery myself and with limited resources, it just wasn't feasible for us to pursue.

(If you are part of an organization that would like to see these support programs come to life, please reach out! I would be happy to discuss and share more!)

Today, on the first day of Lyme Awareness Month, I'm happily announcing that LymeBrave Foundation will continue to exist as a resource of hope and healing with educational programs and awareness campaigns. Our Patient and Caregiver Support Portals will also continue to be updated as a support resource to help you manage life with Lyme disease, and this month we're launching a new awareness campaign across our social media platforms. 

Additionally, over the next few months we'll be re-launching our LymeBrave Shop with LymeBrave merchandise and support tools for both patients and caregivers. 

Most importantly, we'll still be here--answering every email, every message, and every comment as best we can. I want to personally thank you all for your patience and support of LymeBrave as we strive to continue to support you. 

If you would like to help support LymeBrave Foundation in our mission, please consider making a donation or reaching out to collaborate, fundraise, or explore awareness campaign ideas with us. Every contribution helps us keep LymeBrave going, and we'd love to hear from you!  

To our caregivers: please remember that your support, compassion, and love moves mountains.

To Lyme patients new and old: please know that there is always hope.

You are heard. You are seen. You are supported.

No matter where you are or who you are, stay strong and keep being brave.

With love, 

Susan LymeBrave Founder

(and the LymeBrave team)