The Symptomatic Hypermobility | Ehlers-Danlos I EDS HSD Neurodivergent Charity. Welcome to our Final Newsletter of 2023! |
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Wow! It's the end of December and the end of another amazing year here at SEDSConnective. We have welcomed many new members, volunteers, advisors and helped grow our community. We are truly thankful to everyone who supports us. Wishing everyone a healthy and happy New Year! Here's our 2023 wrap up... |
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SEDSConnective Xmas Quiz On Monday 4th December some of the SEDSConnective team of volunteers and Trustees (and even a few furry friends!) donned their Santa hats and Christmas jumpers to get together for their annual festive quiz.
It was a wonderful evening and opportunity for everyone to come together, celebrate the year and have lots of fun online. Thank you to Monica, our Trustee and HR Advisor for another brilliant quiz. And, well done to Bonnie who won! 🤩 |   | |
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Thank You from SEDSConnective We'd like to take this opportunity to thank all of our volunteers, trustees, advisors for being part of our community and supporting us for another amazing year.
We really couldn't do what we do without all of your support.
Our advisors are always working hard to advocate and research in all areas of our charity and we are delighted to be able to support them too in their careers. We will be letting you know about the new opportunity for Trustees soon. |   | |
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📢 New Alert Cards We are delighted to announce we have released a series of new Alert Cards on our website that are available to download for free. Essential carer, companion, disabled, chronicall ill, Autistic, ADHD, Neurodivergence plus more....
These were coproduced in the community and won awards form the DHSC and others during 2020/21. They can be personalised as and when needed and FREE!
The cards are available in 2 sizes (wallet and larger) and are fully editable online or can be printed off and handwritten.
We hope that these will be helpful to all. |   | |
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2023 Publications & Presentations We have been busy this year at conferences and events with various volunteers, Trustee Kelly Harris and also with our Patron Dr Eccles Some are listed below: Council for Disabled Children Global Learning Conference with The EDS Society-Connecting the dots neurodivergence/EDS HSD Chartered College of Teaching, Open forum Westminster Conferences Real School Network, Education/ Disability health Ministers, GP networks, London autism networks, BSMS, Teachers Talk Radio live, various podcasts and radio shows. Presenting on: Symptomatic Hypermobility, neurodivergence, Interoception and inner senses, Safeguarding & SEND, Alternative Provisions in Education, Neurodivergence & Symptomatic Hypermobility, EBSA attendance and attainment Children in Education and NHS Doctors. Research with universities, national forums, Boards and panels. Publications include TES, Schools Week on pupils and staff, Business Leader, Inews, Rare DiseaseUK, Empire mag., Diversity & Inclusion Leaders plus more |   | |
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Here to help! SEDSConnective sits on neurodevelopmental diagnostic operation groups, on ICS networks, NICE, Skills for Care, OMMT and many other panels and forums. We work with national and international groups like EDS Echo Disability Forums, Neurodivergent charities in Europe, VSCE forums, Maternity and work with partners like Embrace Complexity, Police, Universities and SAAIL. We are here to help promote research studies and also involved in some research We are happy to say we are named as support charity for symptomatic hypermobility with Versus Arthritis. |   | |
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#NothingAboutUsWithoutUs We run monthly support meetings for members and their families and carers and these are growing in popularity. We also want to run more expert webinar meetings and showcase some of our members. We also pioneer the specialist expert activities that are so needed by us when we can and have shown this works. These groups are really important to us, but won't be possible without the generous donations from our funders and supporters. Your donations make a real difference to us, and so we ask you to support us to be able to keep our important work going. |   | |
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Glow Wild Locally, thank you to everyone who sent us in photos from Wakehurst Place's Glow Wild event during November and December. We are very grateful to Kew & Wakehurst for kindly donating these tickets to SEDSConnective via their CAS Scheme. |   | |
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A word from our Chair Jane Green MBE Thank you for supporting SEDSConnective, the user led voluntary charity which is unique and why it resonates with so many across the UK and globally in all arenas. I appreciate all your support during my own amazing year. The MBE recognises the importance of neurodivergent health matters EDS HSD and symptomatic hypermobilty. This is a start to build on for the next year 2024, HNY! Jane |   | |
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A word from our Patron, Dr J Eccles I wish you all a happy 2024 and grateful for your support for SEDSConnective. Please look out for new research papers from BSMS due to be published shortly. |   | |
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And that's a wrap! 2023 has been another phenomenal year here at SEDSConnective. Thank you to everyone for your ongoing support and commitment. Here's to a wonderful and successful 2024. Happy New Year! SEDSConnective 🎆 |
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