Jane, Chair and Founder of SEDS

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 

Ashwin Soni, Treasurer,Trustee

Ashwin was born in Kampala, Uganda . After graduating became a Chartered Engineer and Fellow of Institute of Chemical Engineering. He also held positions as  Secretary of Medway Hindu Centre and the International Club, Vice-Chairman of the Community Relations Council.  He has helped organise a Hindu centre, Together, a Hindu Cultural Week, trained children to do Ras, Garba and modern dancing routine. 
  
After promotion in his career to Reigate,  he  joined the Gurjar Hindu Union (GHU), and mproved the management of the organisation, led a project to renovate a derelict warehouse into a modern Mandir (Temple).   In 2003 as a Trustee, Ashwin led the project to build a brand new Sanatan Mandir and Community Centre on a green field site. He was a Founder member of Crawley Ethnic Minority Partnership (CEMP), representing 27 different nationalities and communities in Crawley. He was also the Sussex Police Elders’ Commissioner for Crawley for two years.

Currently he is the Chair of Ambassadors at GHU, Treasurer of Crawley Inter Faith Network, Secretary of DiverseCrawley, Trustee and Treasurer of Crawley Voluntary Action. He is an Independent Police Custody Visitor, and Chair of a local Surgery Patient Participation Group. 
 
Married with three grown up children and two lovely grandchildren. He is delighted to be Treasurer of SEDS, knowing Jane Green from the lay clinical commissioning patient group and the excellent work she does for and behalf of SEDS which he thinks needs to be publicised within BAME communities.

Clemmie Blaker, Trustee

Having graduated from Durham University where she studied Biological Sciences, Clemmie is currently applying for a place at Postgraduate Medical School. Having had work experience in both Hospitals and Care Homes for those with severe learning difficulties, she wishes to gain some more experience working for healthcare charities. 

Clemmie volunteered for SEDS for over year now and although had not heard about hypermobility and associated conditions became thoroughly interested in it's complexity and reach of the disorders and conditions. She applied to be a Trustee and was delighted, as was SEDS to have her on Board.

In her free time she enjoys reading and going for runs. 

Monica Collins, HR Administrator

 

Monica is the SEDS’ HR Administrator.  She lives in Horsham with partner, adult daughter and cat.  Has had a long career in HR as a manager and business partner, in both public and private sectors.  Has also worked as a complementary therapist in Crawley for 15 years.

Monica feels an affinity to people with EDS and HSDs as she understands some of the conditions and in particular the symptoms they live with so is keen to raise the profile of SEDS and to support members.

She enjoys walking in the Sussex countryside.

MCIPD, MSc., CThA.

Liz Hughes, Advisor & Admin Support

Liz Hughes is a former IT systems designer whose child was diagnosed with both Asperger syndrome and later hypermobility.  
 
Liz is a school governor with interests in SEND and Looked After Children. She advocates for autistic individuals and runs/admins various online support groups. One she founded in 2015, for people/families living with both autism and hypermobility/EDS, was based on a growing hunch that there was a significant but as yet unrecognised link between these two spectrums. Fortunately in more recent years, there has been an increase in well-received research into these interconnected areas and is very keen to help Sussex SEDS.   Liz has been involved in several autism-related research projects.
 
She studied at the University of Sussex and enjoyed cycling and time trialling, as well as riding racehorses at Kemptown and Lewes before her own diagnosis of hypermobility! Currently her hobbies are predominantly reading about and discussing autism and hypermobility/EDS, and trying to raise awareness among educators, medical practitioners, friends, and anyone else who will listen!

She has a BA and PGDip in economics, but more recently has studied autism, gaining various qualifications from NAS, OU, ICEP and a PGCert in Autism and Asperger Syndrome.

Paul Erdei, IT & Digital Editor

 

Paul is a self proclaimed nerd with practical knowledge and experience in IT and an affinity towards optimising and balancing systems.


He sees himself as a relentless problem-solver who enjoys empowering and supporting those around him. Being an avid gamer, he is organised, driven and strives to uphold a high level of professionalism.


The mad context of 2020 has raised his awareness about the general need for help and thus he's decided to live a less individualistic life. Having had a parent with serious mobility issues, he can empathise and understand mobility related issues and thus decided to volunteer for SEDS.

Becky Orpin, Virtual Assistant

Becky works alongside Jane as her virtual assistant at SEDS with a range of tasks from marketing and PR to social media and online events. 

After studying Theatre and Performing Arts, Becky started her career as a Personal Assistant working for two founding partners of a small, niche data agency in London. Whilst fully supporting the two partners, she was part of helping the business go from less than 10 employees, to being part of one of the largest Advertising Agencies in London - changing her 10 year journey from small scale PA to senior EA, finally working for 5 CEO's across the Board. 
 
Becky prides herself on her ability to be able to juggle multiple tasks and projects at the same time, always delivering punctually and with exceptional attention to detail.  


Taking time out to start a family and raise her young children re-focused Becky, to start working on a virtual basis in Sussex. This opportunity has opened up a new world of opportunities, including working with Jane at SEDS and learning about Ehlers-Danlos syndromes and Hypermobility disorders!
 
Becky has a busy household of husband, two kids and a dog! She enjoys good food, wine and also has a passion for the theatre, and enjoys watching her daughter performing as well. 

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