Brighton’s got his hat on, hip hip hip hooray Brighton’s got his hat on and he’s coming out to play! Perfect for #r20raceday Brighton Racecourse #epilepsyawareness #r20
Ring20 Research & Support UK CIO
Health, Wellness & Fitness
Brentwood, Essex 335 followers
Supporting & connecting families, individuals & professionals affected by or in contact with Ring Chromosome 20 Syndrome
About us
Ring 20 Knowledge Base One of our objectives at Ring20 Research Support UK is to identify and participate/help fund research in the future as a patient support group cohort. We are very keen to establish links between professionals and potential subjects looking at areas such as epidemiology, clinical outcomes and treatment protocols. You can read more about the work at The Children’s Hospital of Philadelphia and Dr Spinner’s latest research findings in the Knowledge base section of the home page under Genetics of r(20) syndrome. Our patient support group forum is available on Facebook for all patients and their families affected by r(20) to connect with each other and share thoughts and experiences, in a secure environment. We also operate a separate support group forum on RareConnect for r(20) families to talk to each other in confidence. The difference here is that any posts or information can be translated into any of 11 European languages including: Spanish, French, German, Portuguese, Italian, English – so we can reach out to families across the world. We are always looking to our members and supporters for help when it comes to fundraising, organising events, or hosting a stand/attending conferences, as well as practical skills like; writing fund/grant applications, social media updating, as well as printing educational resources and materials. You may have a skill that would be useful to the day-to-day running of the group, or simply some spare time to offer your support for a specific project (support/training can be provided, if necessary). So please do get in touch with us if you would like to help, or know someone who may be able to.
- Website
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https://ring20researchsupport.co.uk/
External link for Ring20 Research & Support UK CIO
- Industry
- Health, Wellness & Fitness
- Company size
- 2-10 employees
- Headquarters
- Brentwood, Essex
- Type
- Nonprofit
- Founded
- 2014
Locations
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Primary
Get directions
26 Headley Chase
Warley
Brentwood, Essex CM14 5BN, GB
Employees at Ring20 Research & Support UK CIO
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Tim Buckinx
Founder & CEO at Epihunter | Trustee Ring 20 Research & Support UK cio | Public speaker | orpha:1959, son with orpha:1444
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Carl Darby
Director of IT at Listers
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Kim Parks
Specialist, multi award winning accountancy professionals who love working with small to medium sized construction industry company clients | Your…
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Laura Giordano
Digital Media Strategist & Communication Specialist. Helping Companies Find Creative Solutions.
Updates
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Shining like the stars 🌟 that they are, some of our Ring20 Champions and volunteers have enjoyed a rare meet-up and are fuelling up ready for #r20raceday tomorrow. Bring it on!
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Ready for the off, well nearly.... Overnight bags still to pack and picking Kallif Garlicki up on the way - we'll all squeeze in somehow! Getting excited for our 4hr road trip down to Brighton 2moro. #r20raceday #epilepsyawareness #fundraising #r20
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Recently signposted to this publication which was read with interest: https://lnkd.in/equtE8ih "this work underscores the importance of non-coding genes in rare disorders. It will provide a diagnosis to thousands of individuals with NDD worldwide and pave the way for the development of effective treatments..." 🤔 Could this be true for r(20) #epilepsy? We know we can't yet identify a pathogenic genomic variation responsible for the symptoms experienced by those affected, the only thing we can point to currently is a structural change - the ring formation of the chromosome - but is the 'ring' just another symptom, as opposed to the direct cause of the seizures? Could the answer be in the non-coding genes we don't normally test for? Nicola Whiffin
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⏰ONLY 5 DAYS LEFT TO ENTER our prize draw... 🏆 1st Prize: 2x VIP Hospitality tickets to the Family Fun Day at Brighton Racecourse (worth >£200) 🏆Runner up 2x entrance tickets to the race day Winners will also get a unique chance to present a prize to a race winner and enjoy a complimentary glass of 🥂 Draw £2 per entry (bundles available with extra FREE draw tickets!!!) https://lnkd.in/eXXT9qiT Brighton Racecourse's Family Fun Day on Sun,1st Sept is an event not to be missed! Whether you're a seasoned race goer and horse racing fan, or you fancy a fun day out with lots of rides and attractions for the kids (where else can you keep the kids entertained for FREE?) Whatever floats your boat, Ring20 Research & Support UK CIO will be there raising funds AND awareness for r(20) #epilepsy Please share this post so more people can get a chance to WIN! 🙏 #inittowinit
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⏰JUST 10 DAYS LEFT TO ENTER our prize draw to win... 🏆1st Prize: 2x VIP Hospitality tickets to the Family Fun Day at Brighton Racecourse 🏆Runner up 2x entrance tickets to the race day Winners will also get a unique chance to present a prize to a race winner and enjoy a complimentary glass of 🍾 Draw £2 per entry (bundles available with extra FREE draw tickets!!!) https://lnkd.in/eXXT9qiT Help us raise funds AND awareness for r(20) epilepsy #inittowinit #epilepsyawareness Please share widely 🙏🙏🙏
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1 in 6 people have a neurological condition, including r(20) syndrome – that’s any condition that affects the brain, spinal cord and/or nervous system. That’s why we’re supporting The Neurological Alliance #MyNeuroSurvey. Share your experiences and improve care for people affected by neurological conditions in the UK 👇👇👇https://lnkd.in/eQrEvzzt
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Enter for your chance to win: https://lnkd.in/eKhssFt3 Good luck! Please share widely... #EpilepsyAwareness #r20 #horseracing #familyfunday Brighton Racecourse
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Ring20 Research & Support UK CIO reposted this
Ring20 are sponsoring the races at the forthcoming Family Fun Day Brighton Racecourse on Sunday, 1st Sept to raise awareness of r(20) syndrome and rare and complex epilepsies. Lots of fun for racegoers and families alike! If you'd like to come along and join us, why not enter our prize draw to win: 🎁1st prize: 2x VIP Hospitality tickets for the event (worth >£200) and the chance to award a prize to a winning jockey with a glass of 🥂🍾. 🎁Runners up prize: 2x entry tickets plus a chance to award a prize to a winning jockey with a glass of 🥂🍾 Tickets for the draw are just £2 each. Winners will be notified 9th Aug. Enter the draw today and see if you will win! https://lnkd.in/eMraNppJ Good luck 🤞 More information on the event here: https://lnkd.in/ezaCEivc Epilepsy Society Epilepsy Action Young Epilepsy Matthew's Friends Ketogenic Therapies charity Dravet Syndrome UK HOPE for Paediatric Epilepsy: London Genetic Alliance UK RARE Revolution Magazine Rareminds The Neurological Alliance Epilepsy Research Institute Gene People Unique - Understanding Chromosome and Gene Disorders M4RD Epilepsy Sparks SUDEP Action INTERNATIONAL BUREAU FOR EPILEPSY
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Ring20 are sponsoring the races at the forthcoming Family Fun Day Brighton Racecourse on Sunday, 1st Sept to raise awareness of r(20) syndrome and rare and complex epilepsies. Lots of fun for racegoers and families alike! If you'd like to come along and join us, why not enter our prize draw to win: 🎁1st prize: 2x VIP Hospitality tickets for the event (worth >£200) and the chance to award a prize to a winning jockey with a glass of 🥂🍾. 🎁Runners up prize: 2x entry tickets plus a chance to award a prize to a winning jockey with a glass of 🥂🍾 Tickets for the draw are just £2 each. Winners will be notified 9th Aug. Enter the draw today and see if you will win! https://lnkd.in/eMraNppJ Good luck 🤞 More information on the event here: https://lnkd.in/ezaCEivc Epilepsy Society Epilepsy Action Young Epilepsy Matthew's Friends Ketogenic Therapies charity Dravet Syndrome UK HOPE for Paediatric Epilepsy: London Genetic Alliance UK RARE Revolution Magazine Rareminds The Neurological Alliance Epilepsy Research Institute Gene People Unique - Understanding Chromosome and Gene Disorders M4RD Epilepsy Sparks SUDEP Action INTERNATIONAL BUREAU FOR EPILEPSY
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