For over a decade, I have been active in the arthritis, sarcoidosis, and rare disease communities, sharing my experience and insight to advocate, educate, and support others. This includes speaking engagements, legislative advocacy, fundraising/awareness events, advocate training, and more. These days, I focus mainly on writing: sharing my own story through my column at Sarcoidosis News, and amplifying other patient voices through my Kaleidoscope anthology series. My goal is to help patients feel seen, validated, and empowered.
Float with me!
Take a look around - you'll find a bit of my history, experience, and insight, and some of what I've gathered from other advocates and organizations that I think you might find helpful:
- About Me - Here's a quick intro to who I am, what led me here, and where I'm hoping to go from here. I hope you'll join me!
- Why Buttahfly? - We all know that butterflies symbolize transformation. Here's where I explain a bit of my own transformation, as well as why I spell it this way.
- Survivor Spirit - Float Like a Buttahfly began as a simple personal blog back in 2010. It's grown a lot since then, but here I share what led me to start it in the first place.
- What's Wrong? - The simple answer: a lot! Here, I explain a bit more about my history with chronic illness, and the myriad conditions that are affecting me.
- ARTHRITIS (Arthritis Resources, Tools, & Hope: Real Impact Through Information & Support) - Here, you'll find information - and where to find more information - about over 100 different types of arthritis that affect over 60 million Americans, including hundreds of thousands of children. You'll also find more ways to connect with others through groups, podcasts, chats, and more.
- SARCOIDOSIS (Sarcoidosis Advocacy Resource Connection) - Here, I'm bringing together information and activities from advocates and organizations around the world that may be of interest to the sarcoidosis community. Here, I'm bringing together information and activities from advocates and organizations around the world that may be of interest to the sarcoidosis community.
- Kaleidoscope (Rare Disease Stories) - Our stories matter. They help us all to know that we are not alone in this life, in this struggle. We connect through our stories, turning strangers into family. And when our stories matter, it's a reminder that we, too, matter. That's why I created this book, and why I'm getting started on the next one (Invisible Illness Stories).
- Column - In 2021, I was invited to bring my thoughts and experience to a new column at Sarcoidosis News, the web's leading resource for news, information, and daily updates for sarcoidosis patients and caregivers. Here, I'll share links to the column itself and each individual piece I've published.
- Talk Show - In 2022, I was invited to bring my voice (quite literally!) to the AiArthritis Voices 360° Talk Show. This show brings together patients and other stakeholders to discuss issues impacting the autoimmune and autoinflammatory arthritis community. Here, you'll find links to each episode I co-host and the overall show.
- Recommended Reading - In 2022, I wrote one of over 100 stories featured in Keeping It Real with Arthritis: Stories from Around the World. In 2024, I published a unique collection called Kaleidoscope Rare Disease Stories. Here, you'll find information about these and a list of other books written by, about, and for people with chronic illnesses.
- Awareness - In honor of Rare Disease Day (February 28), Sarcoidosis Awareness Month (April), Arthritis Awareness Month (May), and Dazzle4Rare (August), you'll find special pages here, sharing a vast array of activities, events, and awareness campaigns. In time, I'll also add pages for other awareness days/weeks/months.
- Get Involved - Here, you'll find some great opportunities to share your story to make a difference, and even get paid for (some of) the opportunities!
- Blog Archive - Here you'll find everything I've written for the blog, from that first post through June 2021. Since then, most of my writing has gone directly to my column at Sarcoidosis News (see below). When I write about anything else that's not for the column, I'll do that here. Select posts by date from the menu on the lower left side of this page.
If there's something you'd like me to add or want to know more about, you can always reach me at floatlikeabuttahfly@gmail.com, or find me on Bluesky, LinkedIn, or Substack.
🦋Kerry