Florida father to paddle 540 miles for Sjögren’s disease research
Daughter's diagnosis inspires man's solo paddleboard journey
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A Florida man is preparing to pilot a stand-up paddleboard 540 miles along the state’s Intracoastal Waterway to raise awareness and research funds for Sjögren’s disease, a chronic autoimmune condition his daughter was diagnosed with at age 11 after two years of painful symptoms and unanswered questions.
Jason Parker, a lifelong Neptune Beach resident and local business owner, will set off Nov. 2 on a solo journey from the state’s northeastern coast to Key West. He hopes to raise $25,000 for the Sjögren’s Foundation to support research into the disease.
“I really wanted an opportunity to combine an adventure with raising funds for this relatively unknown disease that’s impacted a lot of people,” Parker said in a press release emailed to Sjögren’s Disease News by the Sjögren’s Foundation. “I couldn’t find anyone who’d paddled the whole state on a stand up, so call it a mid-life crisis solo adventure for a cause.”
Parker is inviting supporters to donate through PaddleForSjogrens.com, follow his journey on Instagram, or join him on the water for part of the route. People living along the Intracoastal Waterway can also offer him a place to rest on their dock.
A personal journey
For Parker, the cause is deeply personal. His daughter, Gabby, experienced two years of painful swelling in her cheeks caused by inflammation of the parotid glands, which produce saliva. Despite repeated doctor visits, the family struggled to understand what was causing her symptoms.
Their worries grew when blood tests revealed markers that raised concerns about cancer.
“I think that was the scariest moment,” Parker said. “Another really heavy moment was coming to terms with the fact that this is a chronic condition and she will deal with it in some way the rest of her life.”
After Gabby’s Sjögren’s diagnosis Parker learned that his mother had been diagnosed with the disease in her early 30s.
Sjögren’s occurs when the immune system mistakenly attacks healthy tissues, particularly the glands that produce tears and saliva. Although dry eyes and dry mouth are common Sjögren’s symptoms, the disease can also cause debilitating fatigue, joint pain, and complications affecting other organs.
According to the Sjögren’s Foundation, approximately 4 million people in the U.S. live with the disease, but about half remain undiagnosed. Receiving a Sjögren’s diagnosis takes nearly three years on average after symptoms begin, and about 90% of diagnosed patients are women. Although the disease can affect children, it is more commonly diagnosed in adults.
Funds raised through Parker’s challenge will support research aimed at better understanding Sjögren’s, improving early diagnosis, preventing disease progression, and developing effective treatments.
Parker plans to begin his journey at Fort Clinch State Park in Fernandina Beach, near the Florida-Georgia border, before heading south along the Intracoastal Waterway to Fort Zachary Taylor State Park in Key West. He expects to paddle 22 to 38 miles a day, completing the 540-mile journey in approximately 18 to 20 days.
For nearly the entire route, Parker will travel without a support crew, alternating between camping and hotel stays. The exception will be an 18-mile stretch of open water between Key Biscayne and Boca Chita Key, where a boat escort will accompany him for safety.
Preparing for the challenge has meant months of training along the coast and Intracoastal Waterway, often starting at 5 a.m., before sunrise. His paddles have brought encounters with dolphins, manatees, sharks, and other marine life, as well as the challenges of covering long distances against changing winds and tides.
“The worst part of a long paddle is being six hours in when the wind and tide turn against you with ten miles to go, and your shoulders and feet are screaming,” Parker said. “But there’s great satisfaction in finishing the day.”
Parker hopes the event will grow into an annual community challenge that brings more people together to raise awareness and support those affected by Sjögren’s.
“I can envision an annual Paddle for Sjögren’s where hundreds of people do a shorter endurance challenge together, each raising awareness and having a great time on the water,” he said.
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