The Hypermobility | EDS HSD I Neurodivergence I Autism I ADHD I Dyspraxia I Tourette's + Charity
Welcome to our August edition! Today we are announcing a wonderful grant by the Postcode Lottery and People's Postcode Trust funding support for SEDSConnective. We are delighted so many more volunteers, professionals, groups or charities see the benefits of connecting to us. For many the school term has started already or about to start. We have put together our Founder's expertise for neurodivergence and those with related hypermobility conditions (nearly) all together. We also have a new study for disabled or chronically ill people and how they view communication on physical activity plus a study on health experiences for Black Brown Dual heritage autistic women. We will be presenting more on the media too!
Postcode lottery
We’re thrilled to have secured a grant from the People’s Postcode Lottery, made possible thanks to players of People’s Postcode Lottery and People's Postcode Trust raising funds for us.
SEDSConnective offers significant physical and mental health benefits and wellbeing for individuals with symptomatic hypermobility (EDS HSD ) and neurodivergence. This will help us support more members with these conditions or symptoms and associated connections.
Huge thanks to all players. It will be so useful and needed.
Are you disabled or have a long term health condition and in the UK?
We have been asked to share a new study needing 200 Disabled Adults or those with llong term health conditions (aged 19-64 years) across the United Kingdom regarding their preferences on how to best communicate messages about physical activity with them.
Participants will receive a £10 Amazon voucher upon completion of the online survey.
Email patrick.jachyra@durham.ac.uk for more information
We know not all of you like being on camera but we are delighted how our support meetings are growing. Here is our volunteer Solomon hosting the latest one with a few of the members !
If you would like to volunteer maybe as a parent or someone affected yourself and you can do so reliably please get in touch or want to know more about them.
Meet one of our social media volunteers in the SEDSConnective team, Romy and their new hair style!
We know sometimes medication or other iissues means our hair thins more than we would like.
Romy says 'I wanted to have it done for ages because I hate my super thin hair. Took me ages to get the courage. I look very different so it took me a day or so to get used to it.
Caring as you would do for normal hair, minus the brushing. Wearing a bonnet at night is a good idea.
It took over 4 1/2 hours to do this but I love iit!
Recent research hEDS
Investigation of dermal collagen nanostructures in Ehlers-Danlos Syndrome (EDS) patients.
A recent small, new pilot study was published. Over time, these insights could be developed into specific biomarkers for the condition, improving diagnosis and treatment for hypermobilty Ehlers-Danlso Syndromes hEDS and related connective tissue disorders.
For those with children in school or working in school with neurodivergence and/or symptomatic hypermobility
Do you have/work children with symptomatic hypermobility (EDS, paediatric HSD or joint hypermobility) or unexplained pain, fatigue, allergies + and Autistic, ADHD Dyspraxic, TS, dyscalculic, dyslexic?
Are they finding attendance at school difficult but are not believed to have physical health issues? Are they masking pain?
Jane Green MBE FCCT has many resources as ex lead nationally for autism ADHD dyspraxia , advisory teacher and Assistant Headteacher. She pioneered hypermobility/neurodivergent issues in the school toolkit and other professional education articles not least the immensely powerful and well received Peer reviewed paper on co occurring health challenges with neurodivergent children with coauthors B Donaghy and Dr D Moore. Please do share with any educator or allied professionals. Read more here https://sedsconnective.org/education
Are you in the global majority, Black Brown or dual heritage?
Are you 18 + and in the UK.
Are you an autistic woman ?
This study is reflecting on health care experiences and communicating these through writing, speech or typing or other medium. You and the researcher will then create a poem on these experiences. Please connect on the link or email the researcher to know more.
We are looking for more volunteers to join our team.
We are specifically looking for help with our social media channels or maybe skills in animation, IT support, web content and administration of webinars. We already have a growing own membership of advocates beginning their journey into positive activism sitting of mental and physical forums, panels and studies. We have some amazing opportunties for those with a passion and experience in advocating, training, some data analysis and presenting.
If you are interested please send in what platforms you can engage in reliably and regularly and get in touch - General@sedsconnective.org or the volunteer form.
