Welcome to our Autumn Newsletter!
We are the only expert by experience and voluntary led charity for symptomatic hypermobility (Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders) and neurodivergence (autism, dyspraxia, ADHD and Tourettes’). We are social mobility affirming.
We are making a difference for our lives and ones we care for in health, education, social care, employment, and travel accessibility. We are also actively involved in academic research and projects. We are making a difference in specialised active support and therapies uniquely for ourselves. We are the only charity to do this, led by us for us as experts by experience but also to connect to many others.
If you believe in these values and making a difference, please feel free to offer more and volunteer please get in touch firstname.lastname@example.org
We do have more steering committee vacancies and in some areas advisers, if more able with time and reliability too. Ideas are always welcome but we are voluntary and symptomatic so there might be delays in replying.
Ehlers-Danlos syndromes, autism and SEDSConnective was in the UK’s best selling Womans’ Weekly magazine in August on pets that make a difference.
I hope you enjoy reading!
We had a special launch ‘Perspectives on Pain’ in East Brighton thanks to the East Brighton Sussex Community Foundation and delighted that our members gave their time some to create some wonderful art depicting pain when often words fail. MP Lloyd Russell-Moyles and Cllr. Jackie O’Quinn made terrific speeches with Chair Jane Green, Trustee Kelly Harris, and Ian Leaver-Blaxstone from Wellsbourne Health Centre, 179 Whitehawk Road, Brighton, helping to organise it all. It is open until the 14th November and all funds raised from art sales go to SEDSConnective.
We started another specialist Pilates course with hypermobility experts. We are so excited to continue to do this and we have more plans for news one in new locations in other areas. We also are highlighting accessible activities like disability swimming with a new hoist but also suitable for hypermobile flare illness swimmers, disability rugby, basketball, and even rock climbing at leisure centres
We were delighted to be awarded a wonderful fund from Versus Arthritis and Co-op for community support and activities for our symptomatic hypermobile and neurodivergent members. There are lots of ways you can support SEDSConnective. We have a donation page on our website.
You can also support us by playing the Horsham Community Lottery, where you can be in with a chance of winning a share of £25,000, and for this month only (October) a £1,000 bike. Plus, we are delighted to announce our community partnership with Coop (link) - Cause ID: 70185. Become a Coop member, and every time you shop at Coop, you support us! Thank you for your donations
We have an exciting webinar for 20th November 2022 with Dr. Eccles and Dr. Quadt who both based at Sussex university on
Making the connections: A Journey in hypermobility research, exclusive to SEDSConnective To buy tickets (£15 non-members, for Members it's free!), we have limited numbers so do register in time.
The Chair and Founder of SEDSConnective Jane Green met up with our Patron and leading researcher, Dr Eccles, at Sussex University, with the latest developments in the research projects on hypermobility and neurodivergence.
Plans were also finalised for the dual presentation of the first symptomatic hypermobility, neurodivergent presentation workshop at the International Network of School Attendance (INSA) in The Netherlands. We presented our work and the online school toolkit for EDS and JHS as the content was led by Jane Green. It was an extremely useful conference, and we know we are ‘making waves’ in this area when so many children and young people are being failed in acknowledging their physical health issues and wellbeing at the present time. We hope with our work ongoing this will change. We are leading this!
SEDSConnective had the ‘Transforming autism health and wellbeing in a community and beyond’ accepted by Autism Europe conference in Cracow. Our video is also there as we are aware health and wellbeing are co linked with social care, education, education and employment opportunities, social networking, social mobility, accessibility to travel and study. Additionally, Our 2 new pain advisers Dr David Moore and PhD student Bethany O’Donaghy joined SEDSConnective officially and are now long time allies of our work. We are excited for future developments.
We also have some fantastic new items in our resources and items collection, some are free!
From helpful webinar cards, to *ahem* a little early Christmas cards! Everything helps support our members and what we do!
Thank you for reading our Autumn Newsletter!