SEDSConnective News
SEDSConnective
Neurodivergent #Ehlers-Danlos EDS #HypermobilitySpectrumDisorders Voluntary, user led charity.
The Hypermobility | EDS HSD I Neurodivergence I Autism I ADHD I Dyspraxia I Dyslexia I Tourette's + associated conditions Charity
Welcome to out December newsletter and the latter part of another amazing year here at user led charity SEDSConnective 2024
Dyspraxic? DCD? New blog by Kat Cauchi
'"I get tired quite easily from physical activity, so exercise is something I have always struggled with.
I didn’t enjoy PE whatsoever at school because of this and my poorer coordination skills".......
School pain (hypermobility) affecting behaviour and attendance?
Jane Green MBE is interviewed by Beacon Support school, Simon Currigan, who had never thought about these connections before but would consider these in the future. We wondered how many more were unaware? You can listen here or read the transcript:
Our conditions are recognised by the Royal College of Psychiatry!
After many years of personal advocacy by our Founder, more years by our Patron, and 6.5 years of pioneering through SEDSConnective, our user-led, community-driven charity, you our members and supporters have all helped. It's incredible to see these vital connections of neurodivergence and hypermobility (formally EDS JH) finally being recognised and given a voice.
The Royal College of Psychiatrists now acknowledges the co-occurrence of Autism, dyslexia ADHD, DCD (Dyspraxia), Tourettes, I disabilities, epilepsy AND Joint hypermobility / Ehlers-Danlos syndromes (EDS) as interlinked conditions that significantly impact both physical and mental health.
Oh my GERD or GORD!?
GORD—or, GERD—depending on your location, which stands for gastro-oesophageal reflux disease. Whatever you call it, it’s when acid and other contents of the stomach reflux back up. Often this causes a burning sensation in the chest, oesophagus or throat. It can cause a cough, or have no symptoms.
?
Read more by our dietitian adviser C Harris MPH RD
Key news !
Education SEND ADHD Autism Dyspraxia and hypermobility research summary
The Chartered College of Teaching have published the education research summary on physical health challenges in neurodivergent (ADHD Autistic Dyspraxic TS +) children and young people which affects attendance and attainment by Jane Green MBE. We have heard many now using this for help in their Education Health Care plans.
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Read more here in the link ! https://my.chartered.college/research-hub/physical-health-challenges-in-neurodivergent-children-and-young-people/
Events
Our advocates have been raising awareness on various panels, forms and Boards in mental health,neurodivergence and the interplay with physical health.
Our Patron, Dr Jessica Eccles was busy at conferences across the UK whilst our MSK adviser Bonnie Southgate presented at MSKExpo in Birmingham on hypermobility and neurodivergence.
Wednesday Weekly Webinars!
We started with who we were as a charity in the first week and some of the issues with getting a diagnosis for adults both for hypermobility and Autism/ADHD last week. Next week are the key gifts to ourselves or to others that we would like for the festive period to support our health and wellbeing.
?We are thrilled how they are being received. Some of the comments received were
'time just flew'
''I felt more at home in this group than any other I've been to'
'Brilliant'
''had a fabulous meeting'
Do join us over the next week and every week! To join click on the link or if already a member sign up! A new link is sent out every week on events on the website.
Website events: https://www.sedsconnective.org/upcomingevents?utm_campaign=95e6f8a0-ab8b-4c25-bec1-de65791f11c0&utm_source=so&utm_medium=lp
Fundraising ideas
If you haven't chosen a Giving Tuesday charity yet please help us as a completely voluntary charity continue to help you with physical / mental support and change minds in policy.
Fundraise here: https://www.sedsconnective.org/funding?utm_campaign=95e6f8a0-ab8b-4c25-bec1-de65791f11c0&utm_source=so&utm_medium=lp
Research involvement needed
If you are autistic or self identify as autistic or a woman researchers are looking for experiences of positive autism social activities research. This has ethics approval.
Email [email protected]
New Year Activity for locals in Seaford in Sussex, UK.
A volunteer adviser has helped raise some funds for 5 or 6 members to do a FREE course of the Alexander Technique with Natalie, our specialist AT teacher adviser. Starts 18th January 2025.
Email for more information to [email protected]
Sign up to easy fundraising: https://www.easyfundraising.org.uk/causes/sedsconnective/?searchSessionId=bf458f8a-a99e-4965-96ef-06edc7829b39
We're on Google! Please leave us a review!
We are pleased to let you know that you can now review our charity on Google!Just search SEDSConnective in the search bar or use the link below to leave us a review.This is a wonderful opportunity for us to hear back from our community and also supports us when applying for critical funding as clear social proof of our work with our members and friends. Thank you! ?????
Review SEDSConnective here: https://www.google.com/search?client=safari&sca_esv=fd83c31420bdc485&sca_upv=1&hl=en-gb&kgmid=%2Fg%2F11wh_m00lt&q=SEDSConnective&shndl=30&source=sh%2Fx%2Floc%2Fact%2Fm1%2F3&kgs=c27d3418aa803685
December and New Year!
Thanks as always for your continued support from everyone at The SEDSConnective Team wishing you a safe, healthy festive period and Happy New Year whether on your own or with family :)
Thanks as always for your continued support, we are extremely grateful.
You can sign up to receive our newsletter straight to your inbox and hear all our news before anyone else here.
And why not register to become a SEDSConnective Member? You will be the first to know about exclusive events, meet ups and activities. It's FREE and we are a warm and friendly community. Sign up here.
And, if you have any news articles or ideas for our next edition - please let us know!
Happy Winter from everyone at The SEDSConnective Team