I'm Paddling the Length of Florida for My Daughter.
The inaugural Paddle for Sjögren's. 540 miles, Fort Clinch to Key West, starting Nov. 2. Help me raise money and awareness for a disease that affects four million Americans and far too few people have heard of.
The Numbers
540
miles from the Georgia line
to Key West
18 to 20
days on the water
22 to 38
miles a day
$25,000
fundraising goal
1
paddleboard
Why I'm Paddling
My daughter Gabby was 11 when she was diagnosed with Sjögren's disease.
It took two years to get there. Two years of pain. Her cheeks would swell because a gland was clogged, and she would be moaning in pain. All we wanted was to make her feel better, and we felt stuck.
I remember getting test results back at one point and the doctor telling us the inflammatory markers looked very similar to certain types of cancer. That was the scariest moment. Then, after the diagnosis, came another heavy one: coming to terms with the fact that Sjögren's is a chronic condition, and that she may deal with it for the rest of her life.
It turns out it's unusual to be diagnosed this young. Later, I found out my own mother had been diagnosed in her early thirties and had been living with the disease too.
So this is personal. And I wanted to do something about it.
I wanted to combine an adventure with raising money for a disease most people have never heard of. I searched for a route, and the one that kept calling to me was the whole state of Florida, seen from the Intracoastal Waterway on a stand-up paddleboard. I couldn't find anyone who had done it. Call it a mid-life crisis solo adventure for a cause.
Every mile is for Gabby, for my mom, and for everyone who has spent months or years searching for answers.
What Is Sjögren's Disease?
(Pronounced SHOW-grins.)
Sjögren's is a systemic autoimmune disease, which means the immune system mistakenly attacks the body's own healthy cells, in this case the glands that make moisture. It affects the entire body, not just the eyes and mouth.
Many people know it as "the dry eye and dry mouth disease." That description barely scratches the surface. Sjögren's can also bring profound fatigue, chronic pain, nerve problems, and serious complications involving major organs.
Here's what surprised me most:
About 4 million Americans live with Sjögren's.
Roughly half of them are undiagnosed.
On average, it takes nearly three years from the first symptoms to a diagnosis.
Nine out of 10 diagnosed patients are women, and a growing number are being diagnosed under 18, like Gabby.
It's common, and it's still one of the most overlooked diseases out there.
That's exactly why I'm doing this.
Source: Sjögren's Foundation.
Where Your Money Goes
Every dollar raised goes to the Sjögren's Foundation, the national nonprofit leading the fight against this disease through research, education, and advocacy.
The goal isn't just to help people manage symptoms a little better. It's to understand what causes Sjögren's, identify it earlier, prevent it from progressing, and develop treatments that change its course.
I looked hard at where I wanted this money to go. The Foundation moves this work forward in a balanced, efficient, and fiscally responsible way. The Foundation is a 501(c)(3) nonprofit.
THE JOURNEY
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Fort Clinch State Park, Fernandina Beach. The Florida-Georgia line runs through the middle of the inlet there, so I'll paddle out to the middle of the channel to make it official.
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Fort Zachary Taylor State Park, Key West. The tip of the state.
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Roughly 540 miles, the entire length of Florida, mostly along the Intracoastal Waterway.
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18 to 20 days, starting [Monday, Nov. 2]
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My shortest day is 22 miles. My longest, for now, is 38.
The Route
How I'm Doing It
This is a solo, stand-up paddleboard journey, and I'll be unsupported for almost the entire trip.
No chase boat.
No support crew hauling my gear.
The one exception is an 18-mile open-water stretch between Key Biscayne and Boca Chita Key.
For that crossing, I'll have a boat escort for safety.
Each night will be a mix of hotel stays and camping along the route.
The Honest Part
The part I've learned to respect: being six hours into a paddle, with ten miles to go, when the wind and tide turn against you.
Your shoulders and feet are screaming, and there's only one way to the finish. The payoff is the feeling of finishing the day.
The parts I'm not looking forward to: being away from my family, blistered hands, chafing, and the boat traffic on the Intracoastal down south.
I'll take all of it. Gabby has dealt with a lot worse.
How I've Been Training
Lots of 5 a.m. starts in the dark.
A mix of ocean paddles and Intracoastal paddles.
I've caught some incredible sunrises and had dolphins, manatees, sharks, redfish, and tarpon show up along the way.
How You Can Help
You don't have to paddle 540 miles to be part of this.
Here are five ways to get in the boat with me.
DONATE
Every dollar goes to Sjögren's research through the Sjögren's Foundation. Our goal is $25,000, and I'd love to blow past it.
Pledge by the Mile
Can't give a lump sum? Pledge a little for every mile I paddle. At 25 cents a mile, that's $135. At 50 cents, $270. At a dollar a mile, $540.
Follow Along and
Spread the Word
Follow the journey on Instagram at @PaddleForSjogrens Like it, comment, and share it with your friends. Every share puts Sjögren's in front of someone who may have never heard of it, or someone who has been searching for answers.
Let a Tired Guy Rest on Your Dock
Know someone who lives on the Intracoastal between Fernandina Beach and Key West? Ask them to let a worn-out paddler rest on their dock for a bit. I'll be grateful, and I'll probably be hungry.
Paddle a Mile
(or Ten) With Me
This year's paddle is a solo trip, but I'd love company. If you're along the route and want to paddle a stretch with me, I'll gladly take it.
Sponsor the Paddle
If your business or organization wants to stand behind this cause, I'd love to talk.
Follow Along · Follow Along · Follow Along ·
Follow Along · Follow Along · Follow Along ·
I'll be sharing photos and video from the water throughout the trip, including what the journey looks like from my point of view.
Follow @PaddleforSjogrens on Instagram for updates, and check back here for the story as it unfolds.
This year's Paddle for Sjögren's is a solo endurance challenge. But I don't want it to stay that way.
I can see an annual Paddle for Sjögren's where hundreds of people take on a shorter route together, each person raising awareness and having a great time on the water with like-minded people.
What does success look like this year? Awareness goes up. Dollars get raised. I make it to Key West alive. And people reach out asking to join me next year.
Where This Goes Next
Frequently Asked Questions
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A solo, unsupported, 540-mile stand-up paddleboard journey the length of Florida, from Fort Clinch State Park to Fort Zachary Taylor State Park in Key West, to raise money and awareness for Sjögren's disease.
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[Monday, Nov. 2.] It should take 18 to 20 days. Weather and tides will make the final call on some days, so follow @PaddleforSjogrens on Instagram for real-time updates.
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My daughter Gabby was diagnosed with it at age 11, and my mother has lived with it since her early thirties. You can read our story above.
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To the Sjögren's Foundation, to advance Sjögren's research.
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Yes, with one exception. An 18-mile open-water stretch between Key Biscayne and Boca Chita Key will have a boat escort for safety. The rest of the trip, I'm on my own, staying in hotels and camping along the way.
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Yes, I'd love that, especially for a mile or ten. Fill out the contact form to paddle with me.
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Please do. A dock and a place to rest is one of the best gifts a tired paddler can get. Please fill out the form to help me out.
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Absolutely. Just fill out the contact form and we will get back in touch with you shortly.
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Stacey Steiner, Director of Digital Marketing, Prattify. Stacey@prattify.com