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FINDING ALTERNATIVE PATHS INTO EARLIER DIAGNOSIS... Another great presentation from the 2024 Conference. Robert Smyth discusses the continuous cycle of a rare syndrome and speaks about his current research project linking Perthes Disease with Stickler Syndrome.

Robert Smyth (2024 Conference)
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The research looks into possible screening tools to help with earlier diagnosis of Stickler Syndrome and potentially reduce the risk of retinal detachment before the average age at which this becomes 'higher risk'.

Stickler Syndrome UK hopes to engage our own audience of Stickler families to help with this research and we'll be communicating, through our 'Briefs' eNewsletter and through social media, on how you can help the team with this research. This is a New Year 2025 initiative.

This is the kind of initiative that can really make a difference to people's lives by being able to offer preventative treatment before a retinal detachment occurs in a young life.

Please look out for this and help us to provide Robert and his research team with the numbers of responses that they need in order for our input to be most effective.

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BARCELONA "HERE WE COME!"... for the Mitja Marato (Half-Marathon) on 16 February 2025. We'll have some presence at the event with Sandro Racca, from a small village near Turin (Piedmont, Italy) taking part to raise funds for continued UK research through Stickler Syndrome UK.

We met Sandro, wife Irene, and daughter Stella, at the 2024 Conference where they'd made the trip from Italy to Cambridge for the 2-day event. Charity representatives will meet up with the family, provide the custom running vests, and cheer him on while trying to get some valuable presence at the event.

You can share their family story and understand why we now look to collaborate beyond the UK in small steps... and you can leave Sandro a message of support at the Family's Story through this link.
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And let's not give up on Give as you Live. Well done to all of you who have signed up recently, we've seen some FREE DONATIONS starting to come in from over 6,000 contributing online retailers.

This is a great way to donate to a charity (or multiple charities) of your choice without it costing you anything... maybe just an extra little click on your browsing.
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Step 1 - Sign-up at www.giveasyoulive.com/how-it-works
Step 2 - Choose your charity/charities to support
Step 3 - Share with your friends and see how many you can get to join you in this great initiative.

And if you've signed up previously and not really used it, how about having another go at the link above (there's a Help button at the bottom of their web page if things aren't clear). Our top subscriber in the past 12 months has raised £97.

This is great for business purchases too, especially where the seemingly small percentages can amount to larger donations.‍‍