<div>Five years ago, I was diagnosed with Klippel-Feil syndrome, a rare condition where the bones in the neck are fused together from birth. I was told I run the risk of full paralysis. I was in my mid 20's, working a career I did not love, and staring into a future I couldn't control.
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<div>So I decided to control what I could. I quit, emptied my savings, liquidated my 401k, bought a sailboat I had no idea how to sail, and pointed it toward Hawai'i with my kitty Phoenix. That trip changed my life. Millions of you came along for it, and I still don't fully understand why, but I'm grateful every single day.
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<div>Now I'm leaving to sail around the world, solo, non-stop, and no re supply on my ship Phoenix Do Mar. And I now have an opportunity to spread light on something really important to me and to actually do something meaningful.
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<div>Klippel-Feil syndrome is rare, misunderstood, and critically underfunded. Most people have never even heard of it. The people living with it experience it as chronic pain, limited mobility, surgery, and medical bills that never seem to stop. There's no big foundation or charity for it. Just families figuring it all out on their own.
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<div>So this sail is for them.
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<div>Every dollar raised here goes directly to kids and adults living with Klippel-Feil syndrome. When I arrive back home, I'm going to personally ensure the money will go to families and individuals who need support - and give this money to them. Medical bills. A power wheelchair. Home modifications. Whatever makes their hard days a little easier. Just people helping people.
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<div><strong>Where the money goes, and how you'll know</strong>
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<div>Every person and family this fund helps will be shared publicly on my platforms (with their permission). You'll see their faces, hear their stories, and find out exactly what your donation paid for. I'll post updates from the sea as this fund grows, and a full accounting record will be available.
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<div>We are finalizing a partnership with a registered non-profit fiscal sponsor so that donations can be tax-deductible, and every dollar will be accounted for by a third party. Until that's confirmed, this page operates as a personal fundraiser, and I'll update when the partnership becomes official. The funds will remain in the GoFundMe account until this is complete.
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<div><strong>For brands and partners</strong>
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<div>If you're a company that wants to be a part of this, the corporate donations will go directly to recipients. We're happy to recognize partner brands in updates and recipient stories. Reach out via email to talk: <a href="https://beacons.ai/sailing_phoenix" target="_blank" rel="noreferrer noopener"><a href="https://beacons.ai/sailing_phoenix" target="_blank" class="" rel="nofollow noopener noreferrer">https://beacons.ai/sailing_phoenix</a></a>
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<div><strong>What is Klippel-Feil syndrome?</strong>
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<div>Klippel-Feil syndrome (KFS) is a rare congenital condition where two or more vertebrae in the neck are fused together from birth. It affects roughly 1 in 40,000 to 42,000 people. Common symptoms include a shortened neck, restricted range of motion, chronic pain, and nerve damage. It often comes with other conditions affecting the spine, kidneys, heart, or hearing. There is no cure. The current treatment is lifelong management, and for many families the costs of surgery, mobility equipment, and specialist care adds up fast. Learn more at: <a href="https://now.aapmr.org/klippel-feil-syndrome/" target="_blank" class="" rel="nofollow noopener noreferrer">https://now.aapmr.org/klippel-feil-syndrome/</a> 
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<div>If you've ever watched one of my videos and felt moved, give if you can. Share this if you can't. And please follow along!
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<div>Let's put a spotlight on a condition that's been in the dark for too long.
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<div>Thank you everyone. For everything.
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<div>There are no rules,
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<div>Oliver and Phoenix
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Sailing around the world for Klippel-Feil syndrome (KFS)

Sailing around the world for Klippel-Feil syndrome (KFS)

Still $6,995 to go. Help us build momentum.