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SEDSConnective News

The Symptomatic Hypermobility | Ehlers-Danlos I EDS HSD Neurodivergence Charity.

It's the end of January and a great start to the new year. January can feel long and hard at times, but we are grateful to everyone who volunteers with us behind the scenes and to all our followers, supporters and members.

 

Here is our latest roundup as we start 2024...

šŸ¦“ International Day of the Zebra

 

Today (31st January) is the International Day of The Zebra
 

Dr Woodward (1940) taught his students to make diagnoses on high probability of common causes rather than explore and search for more complex ones.

When you hear hoofbeats (behind you) expect to see a horse not a zebra in essence

 

So to keep low probability causes less to the fore and this will also mean less cost. & more cost effective.

However we are the zebras in diagnosis as so often disbelieved as many tests come back negative

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SEDSConnective

Research opportunities

 

Title of Proposed Research:

 

Is there ā€˜evidence’ that evidence is used on the ground?

 

An investigation into the experiences of

teaching staff with their adoption of evidence-based and/or evidence-informed practices for supporting autistic students in schools within England.

 

*Please note that the deadline for submitting the survey is March 8th 2024.

 

If you are interested in participating in this research, please click below to complete the online survey.

If you have any questions about participation, please email zxa161@student.bham.ac.uk

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Research Opportunity

ā–¶ļøEvents

 

We have been busy attending events recently and advocating for SEDSConnective.

 

We attended the Council for Disabled Meeting and a key speaker at the SEND Digital Conference and the public policy exchange of the Review of the National Disability Strategy on Health, Social Care and Education.

 

Coming Soon!
We are looking forward to upcoming Physio, Lipoedema and Rheumatology talks with our advisors.


Please keep an eye out for these and all our events on our events page:

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SEDSConnective Events

šŸ“¢ New blog!

 

From Ayisha (SEDSConnective Volunteer)

Trying to refind your passion for dance!

 

"My passion for dance is not lost for good because I think I can get myself back there again, but every single time the symptoms of Hypermobility Ehlers-Danlos Syndromes (hEDS) starts to get the better of me and I'm forced to take some time off - it feels like I've lost that bit of me over and over again..."

 

Read Ayisha's full blog below 

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Read Here

Crafting at Kew!

 

SEDSConnective were extremely fortunate to be invited to attend a Crafting Workshop at Wakehurst Place as part of our relationship with them and their Community Action Scheme.

Volunteer and SEDSConnective advisor Kelly attended the event with Jane.

They were able to take part in basket weaving, clay sculpting and pottery.

 

It was a wonderful day out for the team and we are very grateful to Wakehurst for allowing us these incredible opportunities.

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Visit Wakehurst

#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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Donate Here!

🄳 National Lottery Funding

 

We are delighted to announce that we have been awarded funding from The National Lottery Community Fund to support and run a Neurodivergent Mental Health Project.

 

We plan to use the generation donation to provide more support services designed by those with lived-in experiences to help us both mentally and physically.

 

Read the full press release here: 

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Press Release

āš ļøTrustee Positions!

 

We are looking for Trustees to join us at SEDSConnective. Only a few days left to apply!

 

As a Trustee you will be able to have a strategic input to the direction of our growing charity and will help make a difference to the lives of neurodivergent people and those with physical health conditions in Sussex and beyond.

 

For more information on the role of Trustee and how to apply see below: 

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Trustee Role

It has been great to be back into the routine as we kick start 2024 and are extremely grateful to all our supporters, members, families and friends for your ongoing support and contribution.

 

We are really looking forward to another exciting year ahead!

If you would like to contribute to our monthly newsletter, have a blog you'd like to share with us or just want to get in touch - please drop us a line at general@sedsconnective.org

 

The SEDSConnective Team

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