SEDSConnective Autumn News

Welcome to our October newsletter and the latter part of another amazing year here at SEDSConnective. It's been a busy Autumn here in the UK with lots of exciting news and activities. ??

Happy Halloween! ??

It is the season of pumpkins, skeletons and trick or treating - but sadly it's not always a treat for us with our aches and pains.

Our trustee Kelly has designed this VAS pain measuring tool using mini pumpkins. We hope that many of you are the happy pumpkin at number 1! ??

?We'd love to see your pumpkin carvings and how creative you have been.

Send them in to us and we may even feature some in our social media! [email protected]

POTS and hypovolemia

POTS, or Postural Orthostatic Tachycardia Syndrome, is the most commonly known form of dysautonomia.

People with POTS may have a range of symptoms, like heart palpitations, dizziness, brain fog, headache, and gastrointestinal issues.

To find out more about POTS, read more from our specialist Dietitian Adviser C. Harris MPH RD here.

New study on your experience of seeking healthcare for pain if autistic

We are delighted to help share this new survey on behalf of University of Stirling for people who are autistic or self diagnosed, and aged over 18 and live in the UK.

If you have experienced pain, have sought primary healthcare and are available to take part in an online interview - then you may be able to help.

For more information on how to take part see the promotional poster above, scan the QR code or click here to complete the survey.

Thank you!

We are extremely proud to announce that we are a member of the Disabled Children's Partnership (DCP) - a growing coalition of more than 100 organisations, campaigning for improved health and social care for disabled children, young people and their families in England.

43% of the British public don't know anyone who is disabled and 97% of parents with a disabled child do not believe the public understands the challenges they face every day.

Partnering with the DCP means we an help raise awareness and support their Three Pillars to deliver better support to disabled children and their families.

Find out more about the Disabled Children's Partnership here.

New Podcasts Coming Soon!

It has been a busy awareness month for us, marking ADHD, Dysautonomia, Dyspraxia, Dyslexia, POTS, Mental Health, Menopause and mastCell - to name just a few.

Both our Patron Dr Jessica Eccles, and our Founder Jane Green have been on air talking about research or the 'issues with our tissues' in many different forums, webinars or events.

Watch out for the new podcasts on these coming soon!

NEW BLOG POST!

'Health Challenges with hypermobility, Autism and ADHD' by SEDSConnective Member, Zoe Black

Thank you to member of our community and mother of three, Zoe, for sharing a blog with us about her child's recent medical assessment.

'He is under assessment for double incontinence, Autism and ADHD. This sadly affects his attendance at school as they cannot copy with his toileting needs and he is anxious about appearing different'.

To read Zoe's full blog, please visit the blog section on our website here.

If you would like to share your story, or write a blog for us - send us an email at [email protected]

SEDSConnective Team Away Day

This month our trustees ventured into London for our very first SEDSConnective Away Day!

We were delighted to have as many of the team join us for this wonderful day, and some even managed to join us remotely. The day was hosted by wonderful facilitator; James Spice.

?It was a fabulous, collaborative day together and we can't wait for the next one.

We'd like to take this opportunity to thank all our trustees and we will continue to celebrate the time and effort given by them during Trustees Week - next week!

Have you seen our new look website?

We have been delighted to have lots of support behind the scenes, getting our website up to scratch!

The homepage has had a little makeover, and we are all rather fond of our little unicorns! ??

?We'd love to hear your feedback on the site, and any recommendations for how we can make this a brilliant place for people to come and explore and get plenty of information.

Take a look here!

Do you shop online? Register with easyfundraising and help raise funds for us! ?

We’re registered with easyfundraising, which means over 7,000 brands will now donate to us for FREE every time you use easyfundraising to shop with them! ?

These donations will help SO MUCH, so please sign up to support us – it’s completely FREE and doesn’t take long - Thank you ??

Find out how to register here.

?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! ?????

Leave us a review here.

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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 Autumn from everyone at The SEDSConnective Team

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