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About Us

Symptomatic Hypermobility Ehlers-Danlos NeuroDivergent Syndromes in Sussex & Beyond.

  SEDSConnective improves and actively supports the lives of people with symptomatic hypermobility which includes all classifications and

those undiagnosed(EDS, HSD, JHS) and Neurodivergence (primarily autism, ADHD, dyspraxia, Tourettes’ syndrome) and associated conditions,

families and carers, in health, education, social care, employment and transport accessibility. 

We collaborate with professionals, researchers and advisers in these allied fields, with organisations and other charities in mutual reciprocity. 

 

 We aim to raise awareness and acceptance of our issues in health, education, social care, employment and in transport accessibility through

connection to allied professionals, advocacy and research.

We are independent and mainly experience by expert led from Board down but operate co-productively in essence.  We operate at general

member level supporting with advice, signposting and empowering members to understand but also in the local region actually actively

support by uniquely funding specialist activities and therapies.  

 

More widely we support with advocacy and signposting, with our own publications, research collaborations, leading research from our

Patron Dr J Eccles and her team, webinars and professional talks at conferences.  

We sit on various organisations and Boards as respected specialists in this area to actively support us, ‘nothingAboutUsWithoutUs’

We work in highly collaborative ways to make transformational change leading to better solutions and outcomes both locally and globally. 

We have established specialisms in these areas or allied areas like education, health, social care and or established disability advocates. 

Our Story: Jane Green

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Jane left school early with only 2 basic qualifications at age 16 and was considered dim.  After bringing up her children, both ill, whilst studying online to do degrees and working and bringing up her now adult children, she continuously suffered strange injuries and illnesses.  She was disbelieved to be ill/injured and had to turn down the chance to do her Doctorate due to health issues but continued working in education. She taught at St Piers special epilepsy/autism school, advisory autism teacher in the Local Authority, Lead educationalist at NAS, steered and led out the social model of the Autism Education Trust training, Autism consultancy for Local Authorities, Autism Accreditation assessor and Assistant Headteacher plus professional speaker/consultant.

Her health continued to decline and after being labelled ‘bendy' she was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia stopping her career in 2015. Only then she received a diagnosis of EDS3 now hEDS, but immediately discharged as there was no defined treatment protocol. Although very ill, she felt there would be others out there like her who must also be overlooked. She realised there was a need for more local active expert by experience led support and is a great proponent of coproduction, so enthused others to join her and SEDSconnective was born.  It has now grown to be the first symptomatic hypermobility and neurodivergent global charity.

 

Jane voluntarily led out the first ever school toolkit content for EDS and JHS for UK charities during Covid and has written many publications. SEDSConnective won awards for their innovative work and helping to save lives during the first lockdown and since then. Their resources still reside on the Dept. for Health and Social Care and British Ass.of Social Workers.


She is in demand as she has vast experience, and currently sits on various non Executive Boards in health and social care, as well as founding and Chairing SEDSconnective and other neurodivergent groups. She is involved in various guidances and projects locally and nationally.  This year she has 3 papers being published in health and education this year. 

2006 she was awarded the South East Open University Regional Award and Adult Learner Award for my outstanding achievement and dedication. Crawley Heroes award 2019- winner 

BBC Surrey, Sussex, N Hants- Carers award 2019 commended 

Applause Awards – Lifetime Achievement/Stronger Together/Stronger Communities/sports awards 2019, and 2020. 

Helpforce National Hero Award for covid work supporting others without a break in Sussex and nationally with DHSC and health groups. 2020 

High Sherriff of West Sussex – for outstanding activity and contribution to the community 2020 

Henry Smith MP - Crawley Coronavirus Community Champion for outstanding support in our community during covid 19 2020 and helping save lives  

Mid Sussex Community Champion SEDS and Jane Green for going above and beyond for your community during the coronavirus crisis 2021 

In 2022 Jane won the AK)  autism Heroes’ awards for best support group and the Peoples’ awards

 

Education psych. UK  2nd Most Read Blog on hypermobility despite a covid year in the UK. 

20 articles and publications, press, tv BBC news as a spokesperson, LBC, radio promoting the issues of hypermobility and/or autism.School Toolkit for hypermobility  

Autism Cards/Help Cards, companion cards, prof. Cards. BBCI360 turning it gold for autism acceptance day. 

 

In the 2023 New Year Honours, Jane was awarded an MBE for voluntary services to neurodivergent people (autistic, dyspraxic, ADHD, Tourette’s syndromes) and those with related joint hypermobility syndromes including Ehlers-Danlos syndromes and the also closely related Hypermobility Spectrum Disorders. 


MA Ed. (Leadership and Management), AHT, Autism
Adv. Dip.Ed. (Child Development)
PGCE Sec. QTS
BSc. (HONS) Psych. OU

 

Meet the Advisors

We are always grateful to the skilled advisers for the help they give to our team and our members with their expertise.

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Dr Jessica Eccles

Patron of SEDSConnective

Dr J Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BA in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and following an NIHR Academic Clinical Lectureship is now a Clinical Senior Lecturer in the department of Neuroscience at BSMS. She holds an honorary clinical contract with Sussex Partnership NHS Foundation Trust where she works in the Neurodevelopmental Service. Alongside colleagues, she also set up the Immunopsychiatry service at Sussex Partnership NHS Foundation 

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Bonnie Southgate

Biomechanics specialist

Bonnie's background started off as a ballerina, dancing as a first soloist with the American Ballet Theatre and Royal ballet. After struggling with injury and pain, she became interested in ways to help herself. She began training and exploring different treatments coming to the conclusion that no one therapy was the answer. As a result she has trained in both mat work and all of the Pilates Apparatus through the Pilates Foundation, Sports Massage therapy, NeuroKinetic Therapy, Biomechanics coaching, Body MOT method, John Gibbons Body Master Method just to name a few. Over years of teaching she has developed a unique and holistic approach with a colleague Stephanie Beeson called Pilates Therapy bridging the gap between Pilates + correct movement patterns.  Working with the neurological system rather than trying to force and fight it and hands on therapies. They also have started a comprehensive teacher training course in Pilates Therapy.

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Bethany Donaghy

Pain Advisor

Bethany's PhD project aims to examine factors which relate to pain experience and expression in autistic children and young people through a mixed methods approach utilising various psychophysical and qualitative methods.

She is delighted to be a part of SEDSconnective

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Joshua Oguntade

Orthotics Adviser

Joshua Oguntade BSc (Hons), MSc, MBAPO - Senior Orthotist.

Josh is a clinician and project manager with experience covering a wide variety of conditions and orthoses in adults and children.
He studied Prosthetics and Orthotics at the University of Salford and then went on to complete my MSc in Orthotic Rehabilitation Studies at the University of Strathclyde.

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Assoc. Prof. Dr. Alan Hakim MB MA FRCP(UK)

Rheumatology Adviser

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 Dir. of 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.  

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Natalie Gibellini

Natalie graduated in Psychology (MSc) and has a background working in NHS Psychological Therapies. She also has experience working with people with long-term conditions. Difficulties with hypermobility and persistent pain led her to explore a range of treatments and self-help approaches. Having experienced first-hand the pain management benefits offered by the Alexander Technique, she became an Alexander Teacher. Learning how to better understand and manage joint hypermobility became a personal interest which then transferred into a desire to help others with symptomatic hypermobility. She now has an Alexander Technique Practice in Seaford and facilitates groups for SEDSConnective around Sussex and online.  

Alexander Technique Teacher

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Dr David Moore

Pain Advisor

Dr Moore is a Reader in Pain Psychology at Liverpool John Moores University. His recent work has been seeking to examine the pain experiences and expressions of autistic people, and examining how to better provide pain education and management for autistic patients.

He is interested in the experiences of pain in neurodivergent people and potential links with hypermobility

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Karen Windsor

Lymphatic Reflexologist Therapist

Karen's reason for wanting to join SEDSConnective, is that research has found that the lymphatic disorders are actually a connective tissue disorder closely linked to Heds – EDS – HSD I want to learn more and who better to learn from than the community itself.

Karen is on a mission to CHANGE how we consider and treat Lipoedema and other Lymphatic and inflammatory disorders with a range of THERAPIES, targeting the lymphatics reducing swelling , inflammation and fluid build up. She has  developed a range of treatments based on her lifetime fight with Lipoedema  and other lymphatic disorder.

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