Ooex for People with FSHD and Related Muscular Conditions
Ooex is a mobile platform designed to support people living with FSHD in navigating everyday life - not just symptoms. It helps you tune into your experience, reflect on what matters most, and find energy, purpose, and connection in ways that feel right for you.
How it Works
Rethink and do more
Getting unstuck from limiting conditions requires rethinking your outlook, being open to new possibilities and taking committed action. Ooex helps you to accept your condition or circumstances and drop the struggle. When you do, new opportunities for living the life you truly value come into view.
Find, meet and help others
Help others to understand you
Find and access relevant support
Live meaningfully with FSHD - on your terms
Finally, Ooex helps you rediscover what matters to you - your values, strengths, and ways of contributing - that go beyond your condition. By joining, you can find new ways to share your insight, connect with others, and make a meaningful difference in your own life and in the lives of those around you.
Developed with UK Armed Forces Veterans
Ooex’s prototype, developed with UK Armed Forces veterans, highlights the platform’s transformative potential. Funded by the UK government’s Office for Veterans’ Affairs, this initiative demonstrated how authentic lived experiences can inspire solutions tailored to specific needs, creating real and lasting impact.
Key app features
Novel Interface and Feed
Capture and reflect on the everyday experiences that shape your life, whether it’s managing energy during a short outing, finding joy in creative moments, navigating social situations, or simply resting well. Ooex helps you build a personal record of what supports your wellbeing and where challenges arise, so you can learn what helps you feel most like yourself.
Peer-Peer Support System
Connect with others living with FSHD who truly understand what it’s like. Share experiences in your private group, offer support, exchange ideas, and lift each other up. Sometimes, simply knowing someone else is there - listening, relating - can make a real difference.
Experience Learning Engine
Over time, discover hidden patterns and trends in your experiences. Share them and ask the Ooex learning engine for ideas to obtain personalised recommendations for activities, support and resources to help you do and achieve more in your life.
Activities, Events, Support
Find support, services, and meaningful things to do near where you live. Suggest or add your own activities or events—whether online or in-person. Share what worked for you, reflect on your experience, and help others with FSHD discover new ways to connect, participate, and feel part of something.How Ooex differs
Other tools track symptoms. Ooex listens to your real experience. It works with how you feel, move, rest, connect, and live. There’s no judgment or fix - just support to understand what’s happening and take everyday actions that feel meaningful.
How Ooex for FSHD helps - at a glance
Feature |
Summary |
Express your real experience |
Use a simple, visual tool to reflect on how you're doing -physically, emotionally, socially. |
Capture the moments that matter |
Capture daily highs, lows, or shifts to build insight into what’s helping or draining. |
Connect with others (if you choose) |
Share or browse moments with others -build quiet encouragement without pressure. |
Get thoughtful ideas |
Obtain thoughtful suggestions based on your patterns - to gently support movement or rest. |
Find and explore services and activities nearby |
Find and share local opportunities to connect, move, or engage - curated by users. |
Move at your own pace |
No goals, scores, or pressure - just space to notice and respond at your own pace. |