SEDSConnective July News! ☀️

SEDSConnective News

The Hypermobility |  EDS HSD I Neurodivergence I Autism I ADHD I Dyspraxia I Tourette's  + Charity

😎 Welcome to July!  For some of us the weather is getting hotter so we have put together some tips coproduced by our members for hot weather.  We would be happy to connect to do a cold weather one too. We celebrated our 6th birthday and welcomed new trustees to the charity. 

🎉Happy Birthday SEDSConnective! On 22nd July we celebrated our 6th birthday with our members and community.
 
We ran lots of things on our Facebook group including caption competition, fancy dress photos and lots of cake!
 
It was great to have so many people get involved to share in our special day. 
 
We are extremely grateful to all of you from 2018 to now joining and supporting us from a very small voluntary group to a global charity. We are user led and voluntary but steadily growing! 
 
If you would like to join us as a member on our private Facebook Group; click below to join:

Facebook Group

✒️New Blog Post! Gastroparesis by Dietician Cheryl Harris.
 
Let’s break down the word:- 
"Gastro" (stomach) - "Paresis" (weakened movement). 
 
Food and/or liquid take longer to empty from the stomach, and that can cause symptoms like nausea, vomiting, early fullness, bloating, reflux, pain, etc. Gastroparesis (GP) is common in both people with hypermobile Ehlers Danlos syndrome, or hEDS, and hypermobility spectrum disorder (HSD), and it’s also seen in people with classical EDS, too.
 
For more information and to read Cheryl's full blog: 

Gastroparesis Blog

📢New Research published!  
Dr J Eccles, Our Patron, and team from Brighton Sussex Medical School published a new paper on 
Brain /Body research.  
 
These findings explored the role of proprioception (often issues with dyspraxia neurodivergent Autistic or ADHD individuals) hypermobility and how it affects our emotions in neurodivergence.
 
 This paper explains how these connect,  the brain and body and it is quite important to see a person as a whole being rather than separated.  We think this is a big milestone! 
 
 Link here to paper :
 

📢Call for Participants - Research 1 
We are sharing this research call for participants on behalf of The Tavistock and Portman NHS Foundation Trust. 
 
The research is 'an exploration into the school experiences of autistic children and young people. 
 
M Thurman is conducting the research as part of her role as Trainee Educational Psychologist. 
 
She is looking to speak with autistic young people aged 14-18yrs who are currently attending school or college. 
 
For more information on the research or to take part, contact Maisie below:

Maisie Thurman

📢Call for Participants - Research 2 Our Patron; Dr J Eccles  is supervising this study by BSMS NHS Trust. 
 
They are looking for participants who have experienced stigmatising language in NHS-based healthcare. 
 
If you are aged over 18, are autistic and English speaking - you are eligible to take part in this online interview. 
 
See poster for more information or contact the team below:

BSMS Research

📢Call for Participants - Research 3 We are sharing this research on behalf of University of Glasgow.
 
They are looking for neurodivergent adult participants to help with a study on careers.
 
If you are neurodivergent or self-identified neurodivergent aged between 17-30 and are in work experience, college, uni or employment then you can participate. 
 
See the poster for more information or get in touch with Martina below:

University of Glasgow Research

🌟Welcome to our new trustees We are delighted to welcome our new trustees Andrea and Katy. 
 
We are excited to have them join them and they are both a very welcome addition to our team.
 
We are really looking forward to having them help support
 
If you want to know more do look at our website

Join us!

🟢Gastroparesis Month - August  August is Gastroparesis month. 

Did you know that 90% of people with hEDS and HSD commonly have these gastrointestinal issues?
 
We will be supporting and raising awareness of this condition that many of our members and community have. 
 
Please read our blog by dietician Cheryl (see above) or take a look at this article on Gastroenterology for more advice and useful tips from Practical Gastro and look forward to our webinars in the October /November

Practical Gastro

We need YOU! 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.  We have some amazing opportunties for those with a passion and experience in advocating, training and presenting. 
 
If you are interested please send in what platforms you can engage in regularly and your keen interests and get in touch - General@sedsconnective.org or the volunteer form. 

Social Media Summer Team

The summer season is here in the UK and it can be a quieter month for SEDSConnective.
We are always here for our community, and our team will come back to you as soon as we can - but please bear with us during this quieter time. 

Wishing everyone a healthy and happy August Month
The SEDSConnective Team :)  

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