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Share Your Story!![]()
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We want to hear from you! Whether you’ve navigated scoliosis yourself or supported a loved one, your story could inspire and empower others in our community. 📖![]()
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If you're interested in being featured in the next edition of Backbone magazine or have a personal experience you'd like to share, we’d love to hear from you! There may even be other exciting writing opportunities available.![]()
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👉 Email your story to [communications@ssr.org.uk]. We can’t wait to share your voice!![]()
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#ScoliosisAwareness #BackboneMagazine #ShareYourStory #Scoliosis
🌟 Supporter Spotlight: Wayne Ingram MBE 🌟![]()
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We are incredibly grateful to @wayneingram.mbe for his inspiring dedication to both his community and the cause of scoliosis research. His upcoming memoir, Soldier of Conscience: A Story of Courage and Hope, chronicles his incredible journey from the battlefields of war to confronting PTSD—and ultimately finding healing through compassion and service.![]()
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What makes this even more special is that all royalties from Wayne's book will go directly to support scoliosis research and children's charities, including SSR. This generous contribution will help make a real difference in the lives of those affected by scoliosis.![]()
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✨ Coming July 2025. Stay tuned for pre-order de#soldierofconscienceC#wayneingrammbee#HopeAndHealingA#scoliosisawarenesss#supportscoliosisresearchi#SSRearch #SSR
What is the study about, and who can take part?![]()
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Researchers at the University of Greenwich, led by Prof. Lesley Dibley, are developing a new quality of life tool, called a PROM (Patient Reported Outcome Measure) to accurately represent patients’ concerns regarding the everyday impacts and consequences of living with Adolescent Idiopathic Scoliosis (AIS) as they get older. The team has completed Phases 1 and 2 and are now recruiting for Phase 3 (Cognitive interviews) and Phase 4 (Validation), and are seeking participants who meet the following criteria: ![]()
• Live anywhere in the UK, and are at least 18 years old![]()
• Have a confirmed diagnosis of AIS, that can be evidenced by x-ray or hospital letter![]()
• Have completed any treatment (bracing, exercise, fusion surgery or a combination of these, or decision made to have no treatment) at least 5 years ago, ie: before 2019. ![]()
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People whose scoliosis was corrected with Harrington rods or is a consequence of any other syndrome or condition, such as Ehlers-Danlos Syndrome, cannot take part. ![]()
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What will I be asked to do? ![]()
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We invite you to take part in EITHER Phase 3 or Phase 4 of the study: ![]()
For Phase 3 (Cognitive interviews) you will be invited to an online Teams meeting with Prof Dibley; you will be asked to talk through the draft PROM and comment on its usability, readability, the phrases / language used and your ability to answer in the way you wish to. This helps us refine the PROM so we know that we are asking the right questions, in a way that makes sense to users. This is called ‘content validity’. We develop the final PROM ready for Phase 4, from what we learn in these interviews. We need about 30 participants for this Phase. ![]()
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For Phase 4 (Validation) you will be sent a link to a secure online survey and asked to complete the PROM on two occasions, about two weeks apart. We then compare both sets of responses using statistical methods, which enables us to show whether the new PROM is stable and reliable. If you agree to Phase 4, there will be a few weeks’ wait whilst we complete Phase 3. We need about 200 participants for this phase.![]()
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I’m interested, how do I find out more? ![]()
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Please email Prof Dibley via L.B.Dibley@Greenwich.ac.uk ; she will send you the participant information sheet containing detailed information about the study. If you do wish to proceed, you can then email her again with your decision and she will make the necessary arrangements.
🎉✨ New Year, New Savings! 🎉✨![]()
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We're kicking off 2025 with a huge 25% OFF across our entire online shop this January! 🎁 From practical running vests to our 2024 Christmas card stock, it’s the perfect time to get a head start on next year’s festive season. ![]()
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Every purchase supports the incredible work of SSR in raising awareness for scoliosis and funding vital support & research.![]()
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🛒 You can find all our discounted items through our website. ![]()
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#Sale #ScoliosisAwareness #SSR #Charity #NewYearSavings
What better way to kick off 2025 than by joining the SSR community?![]()
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In order to ensure that our support reaches as many people as possible, and in recognition of rising costs, we wanted to remind you that we have overhauled what was formerly our Membership Scheme.![]()
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Now, you can support our work and have access to the above services simply by completing a form on our website to set up a regular donation of an amount that you are comfortable with.![]()
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We feel passionate about being able to provide as many people as possible with support and will be looking to further increase what we can offer to our community going forward.![]()
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Sign up on our website by clicking the ‘JOIN US’ button at the top of the page.![]()
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Happy New Year from all of us at SSR and here's to an exciting 2025. 🎉
Our office and Helpline will be closed for Christmas from 1pm on Friday 20th December, reopening again on Monday 6th January at 9am. ![]()
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🎅Everyone at SSR would like to thank you all for your support throughout the year and wish you a very Merry Christmas and Happy New Year! 🎄
