Chair & Founder
On 18th June 2018 Jane founded SEDS to increase local specialised support and improve awareness, knowledge and understanding of EDS/HSD and co-occurring conditions plus advocate in key areas of health, social care, education 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 associated 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. She taught at St Piers special epilepsy/autism school, advisory autism teacher at WSCC, lead educationalist at NAS, helped design and led the AET training, DfE, Autism consultancy for Local Authorities, Autism Accreditation assessor and strategic Assistant Headteacher.
Unfortunately, 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 must be others out there like her who must also be overlooked. After joining and volunteering with the Ehlers-Danlos UK charity she realised there was a need for more local advocacy and 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 is still on the Co-production Steering Group and recently a Trustee at SCIE as well as a local carers' charity. She advises on Covid19 guidances and resources as an advocate patient with lived experience and recently appointed to the OMMT autism and Learning Disability WAGE and Cochair of the Strategic Oversight Group . Theme advisor to NIHR ARC KSS and advising health policy for trainee medical students. She is currently leading educational content on the new Ehlers-Danlos hypermobility school toolkit education for primary and secondary schools to be launched this Spring.
In this Covid19 era she was 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 at the Mid Sussex Awards.
‘It has been obviously been a very stressful year 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