Chair & Founder
On 26th June 2018 Jane founded SEDS to increase local specialised support and improve awareness, knowledge and understanding of EDS/HSD/JHS and co-occurring conditions. To advocate in key areas of health, social care, education, employment and transport accessibility locally.
Jane studied for her degrees late, whilst working and bringing up her now adult children, who are hypermobile, and had other co-occurring issues. Throughout this time she continued to suffer odd injuries, illnesses and pain. She was told the injuries could not have happened and disbelieved so 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 at WSCC, lead educationalist at NAS, Assistant Headteacher, steered and led out the AET training, Autism consultancy for Local Authorities, Autism Accreditation assessor and
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. After joining and volunteering with a national charity she realised there was a need for more local active support so enthused others to join her and SEDS was born.
Currently, Jane advises various organisations, Boards and groups and also links with other charities. She sits on SCIE as a Trustee, the Co-production Steering and DEI Group. For many years a local Trustee at CSWS. Jane also sits on the Oliver McGowan mandatory autism training #OMMT workforce England autism group for experts and the Strategic Oversight Group plus coChair. She is a Theme advisor to NIHR ARC KSS and advising Time4Autism autism health policy for trainee medical students. During Covid she created content and led out the first ever UK school toolkit for EDS and JHS for primary and secondary schools links with key researchers in the field. She leads on the new SEDS contract within a consortium on a new HEE project.
She has been recently recognised with the Crawley Coronavirus Community Champion Certificate, awarded the High Sheriff Special Recognition Volunteer award for outstanding activity and contribution to the community, for Helpforce and other commendations for Life Achievement and delighted that SEDS was commended as a Stronger Together group for the 2nd year in a row. She is delighted that SEDS has been nominated as the Crawley Mayors' chosen charitable group 2021/22.
‘It has been obviously been very stressful years for our members, both physically and mentally so SEDS has never been more needed in this time'.
MA Ed. (Leadership and Management), AHT, Autism
Adv. Dip.Ed. (Child Development)
PGCE Sec. QTS
BSc. (HONS) Psych. OU