What's new?
19 January, 2025
IT'S OUR VERY OWN 'ITALIAN JOB'... But it's not Michael Caine, it's Sandro Racca who will be running for Stickler Syndrome research initiatives here in the UK.
After flying in from Italy for the 2024 Conference, wife Irene and daughter Stella managed to convince Sandro to run the Half-Marathon in Barcelona. He's not an established runner, so this has meant getting into a regular training regime alongside work and family commitments.
This lovely family decided that the key research into Stickler Syndrome was here in the UK, so their active Just Giving page has managed, so far, to fundraise over £1500, mostly from their local connections. That same page has their Family's Story about coming up against Stickler Syndrome in Italy, and why the decision was made to back the UK research programme.
Every tiny donation has the potential to make a difference to improving pathways to earlier diagnosis and preventative treatments, and edges Sandro closer to his £2000 fundraising target.
Not everyone is in a place to help Sandro hit that target, but if we can share this story and the link, we might just get him there for the event date on February 16. Not just a great motivation, but also a great way to say "Thank you" for his, and the family's, efforts.
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OUR YOU TUBE CHANNEL... is hosting a number of presentations from the 2024 Conference in Cambridge so that the information can be shared to a wider audience.
The latest one is from Robert Smyth who will be researching the possibilities of earlier pathways to diagnosis of Stickler Syndrome, looking deeper into children who were diagnosed with Perthes Disease.
Robert Smyth (2024 Conference)
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 essential numbers of responses that they need in order for our input to be most effective.
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EVERYONE CLOSE TO EAST ANGLIA... there's a 2.5k Inflatables run at Trinity Park, Ipswich on 5th April (details on our Events page). This could be a great 'get-together' for children and families with some brilliant photo opportunities. It's what we subscribed to the 'Run For Charity' events for... getting people together. And if you raise a little bit in the process, well that's great, but we want you to come together around the UK at these events in your own areas.
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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.
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.
