Difficult Conversations in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD)

EDS Society Global Learning Conference in Dublin - August 2-5, 2023

 The Ehlers-Danlos Society is delighted to announce its 2023 Global Learning Conference will be a hybrid event, taking place in Dublin from August 2-5, 2023.

The event can be attended in person or virtually from anywhere in the world, as leading experts present on a range of topics including the following:

• Effective communication for medical appointments

• Managing a symptom flare

• Movement and physical therapy

• Neurodivergence

• Gastrointestinal issues and nutrition. Jane Green MBE FCCT SEDSConnective Chair will be attending as a Keynote speaker and advisor on Connecting the dots between neurodivergence and EDS HSD. More information on the event can be found here

BLOG -Connective Tissue Disorders and Autism?

Rosie Baruah 46, Consultant in Intensive Care Medicine, University of Edinburgh recently wrote a blog piece for us on Connective Tissue Disorders and Autism.

"Discovering my autism at the age of 46 was one the ways in which I have been able to make sense of my life and why I perceive the world around me, and why some things that should be really really easy, I find very hard... had no idea that connective tissue disorders and autism were such common companions and through the SEDSConnective.org website I’ve been able to find out so much more about this"

The story has been well received by many of our members who have been through the same thing as Rosie.. You can read her full blog here

Summer Nights at Wakehurst Place

On Thursday 20th July we held an incredible evening event courtesy of Wakehurst Place.
We were invited to join them to experience their Summer Nights Event - a delight for all the senses.

We were delighted to be joined by our Patron, Dr Eccles and her guests, SEDSConnective members, friends, carers and families as we enjoyed an evening of live music, delicious open-fire cooking, botanical cocktails, and stunning performance in the beautiful grounds of Wakehurs and we are extremely grateful to be able to attend as a Community Access Scheme charity. Thank you for everyone who came and made the evening so successful.

Read our Press Release on the event here https://pressreleases.responsesource.com/newsroom/SedsConnective/release/104323/sedsconnective-becomes-member-of-wakehurst-s-community-access-scheme/

SEDSConnective presented in 2 Education SEND conferences in July

Jane Green presented with Deputy Headteacher Gill LaRoque at Westminster's Insight's The Future of SEND and alternative provision on symptomatic hypermobility and neurodivergence. Also to hear progress and next steps following the publication of the SEND and AP Improvement Plan in

March 2023.

This was followed by the Child Safeguarding conference with Minister for Children, Claire Coutinho. So important developments and awareness of our issues being made for all and more coming soon.

New research study at Brighton and Sussex Medical School in Sussex, England.

Attention training with real-time Neurofeedback: an fMRI study

We have been asked to share a new research study. Participants with an ADHD diagnosis age 18-40 are wanted to investigate how our brains activation patterns can help us improve our attention.

5 weekly sessions at Brighton and Sussex Medical Centre in Sussex, England and one follow up session.

Full ethics approval.

£100 for your involvement time and a picture of your brain!!

Please contact C.Kampoureli@sussex.ac.uk for more information

EXCITING NEWS!
New Advisor for SEDSConnective

We are delighted to introduce our new Rheumatology Advisor - Assoc. Prof. Dr Alan Hakim.

 Dr Hakim is a Consultant Physician and Rheumatologist, and an Associate Professor in Medicine. Following undergraduate and graduate study at Cambridge University, Dr Hakim's clinical practice from 1991 to the present has included training and consultant positions in Cambridge and London, UK.

Alongside his clinical work, Dr Hakim is hugely experienced in education, clinical research, and advocacy and charity work. In 2018 Dr Hakim was appointed Adjunct Associate Professor in Medicine, PennState University, USA. He also joined the international charity The Ehlers-Danlos Society where he is the Chief Medical Officer, Dir. of Education and Research.

Dr Hakim’s work brings him nationally and internationally daily into contact with colleagues from across the breadth of Medicine, where he advocates tirelessly for integrated and holistic care.

 You can find out about Dr Hakim and all our incredible advisors here 

Fundraising Help 🙏🏼

As a charity and voluntary charity we rely entirely on the generosity of funders and donations to continue what we do.

 The fundraising environment is extremely challenged currently, and funds are very hard to come by, but we know we are making a difference in health, education, social care and more.

 At SEDSConnective all money that we raise goes directly to our members, and helps us to run our charity.

 It is really easy to donate to SEDSConnective - and any amount is very welcome. Thank you

DONATE HERE

LOCALGIVING

HORSHAM COMMUNITY LOTTERY

COOP COMMUNITY FUND

Do you want to volunteer for SEDSConnective?

We are delighted to welcome on board new volunteers, but are always looking for new people to come and join our team.

 We are currently looking for people who have experience as website content manager, IT Technician, events coordinator or more.

 If you are interested in joining our friendly team and have skills or fundraising ideas - please get in touch. We'd love to hear from you!