Welcome to #OILife! Born from an undeniable urge to uplift every single person touched by Osteogenesis Imperfecta (O.I.), we’re all about radiating positivity, championing adaptive fitness, nutrition, and wellness — and doing it together.
Across every age, every ability, and every corner of the globe, we’re laying down an #UNBREAKABLE foundation of support. Every O.I. warrior — young or old, newly diagnosed or seasoned vet — is part of this incredible family.
Here’s the real heart of #OILife:
Together, we’re preserving the past, sharing our present, and designing a future that’s inclusive, empowered, and full of possibility.
Through community, storytelling, and movement, we’re proving that you don’t have to do this alone — and you never will.
So dive in.
You’ll find powerful resources, helpful tools, real talk, and real people who get it.
And if you’ve got something to share — we’re all ears.
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Osteogenesis Imperfecta (O.I.), aka Brittle Bone Disease, is a rare deal. It’s not just about fragile bones—this thing’s a collagen disorder. We’ve spotted about 18 different types of O.I. out there. And let me tell you, the severity? Well, that can swing big time, even within each type.
Living with O.I. isn’t a walk in the park, that’s for sure. It brings its own set of challenges, but you know what’s incredible? People worldwide are really making it work! They’re thriving and doing their thing, showing that O.I. won’t hold them back.
We honor the legacy of the Osteogenesis Imperfecta community, learning from past challenges and triumphs to inform a future filled with innovation, inclusivity, and empowerment.
We’re strongest when we’re connected. From monthly gatherings to shared stories and celebrations, community is the heartbeat of #OILife.
We go beyond yellow shirts and hashtags. We educate, advocate, and activate — making sure the world sees O.I. not just as a diagnosis, but as a dynamic and diverse community.
Every story matters. We amplify real voices and lived experiences — visible and invisible, loud and quiet — to ensure no one with O.I. feels alone or misunderstood.
O.I. affects each of us differently, and that’s our strength. We celebrate all types, all bodies, all stories — standing together to support and uplift one another.
From art and music to adaptive sports and storytelling, we embrace creativity as a powerful tool for expression and advocacy.
The #OILife GROUP meeting is the ultimate social spot for the O.I. community! We’re all about diving deep into the topics that truly enhance the quality of life for everyone in the O.I. crew.
Imagine this: you, me, and folks from around the world, all hanging out in a Zoom room, sharing insights and experiences, and having fun while doing it! It’s that awesome! Each meeting features a focused topic that we explore together, but we also keep the floor open for everyone to voice what’s on their mind and share what’s going on in their lives.
Mark your calendar for the 3rd Wednesday of each month, because that’s when the magic happens. We kick off at 7 PM ET / 4 PM PT. It’s your monthly dose of connection, support, and growth with our incredible O.I. community. See you there!
Have you attended an #OILife GROUP meeting? Please share your thoughts here.
Video resources for the Osteogenesis Imperfecta community!
The #OILife YouTube channel is where it’s at for celebrating and shining a light on the Osteogenesis Imperfecta lifestyle.
Everything from live streams (check out The #OILife Show) to awesome interviews with O.I.ers (#OILife Spotlight), and a bunch of other hot topics that matter to the O.I. community.
You’ll find a treasure trove of videos waiting for you on the channel!
As a Certified Personal Trainer with O.I., I’ve dedicated myself to making fitness accessible and empowering for our community. Through personalized coaching and adaptive programs, we focus on building strength, confidence, and overall well-being.
GRAB O.I. GEAR!
Celebrate O.I. Awareness Week and Wishbone Day with our exclusive merchandise. From t-shirts to hats, wear your support proudly and spark conversations that lead to greater understanding.
"Thank you, Tony, for the amazing work you do for our OI community. The more I see the more I appreciate your professionalism, your insights, your consistency in driving open connections across everyone, your intention to support others, and you as a unique, inspirational, and energizing friend in our OI community!"
"...[Tony] shared great insight about health and fitness with OI Foundation conference participants, and was very encouraging to attendees of all ages, physical abilities and backgrounds. Tony naturally connects to individuals to form friendships and expand professional networks. He is very motivating, and shares positive energy with everyone around him. I see Tony as a leader in the OI community online and in-person." Petra Former O.I.F. Health Educator
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TONY JACOBSEN
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