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About SEDSConnective

SEDSConnective is a community-led charity dedicated to supporting individuals with symptomatic hypermobility* who are also neurodivergent**. We offer assistance not only to these individuals but also to their families, carers, and allied professionals.

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From our inception, we have been guided by those with lived experience. Today, we are proud to have built a vibrant community with thousands of members worldwide. Our mission includes raising awareness and understanding of these conditions, and we engage in various activities, such as webinars, presentations, conferences, and global research.

 

*Conditions we support include Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorder (HSD), and Paediatric Joint Hypermobility (pgJH).
**Neurodivergent conditions include Autism, ADHD, Dyspraxia, Tourette's syndrome, Dyscalculia, and Dyslexia plus more. 

Our Story

SEDSConnective was founded by Jane Green, who was inspired to create this charity after years of struggling with mistrust surrounding her conditions. As someone who is disabled and neurodivergent, Jane also cares for her eldest child, who shares similar challenges. After facing a late diagnosis, she encountered difficulties in her social and professional life, and struggled to maintain financial stability. Jane believed there must be others like her—those with symptomatic hypermobility and neurodivergence.

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In 2018, Jane launched SEDSConnective in Sussex, UK. She started as a voluntary charity without funding or connections, driven solely by her passion to make a difference and improve outcomes for those in need.

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Today, we are a global charity with thousands of members worldwide. We remain committed to Jane's original vision, fostering a sense of community where individuals support one another. Whenever possible, we also collaborate with other charities and allied professionals to enhance our impact.

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What We Do

At SEDSConnective, our mission is to educate, raise awareness, and advocate for recognition of the link between symptomatic hypermobility and neurodivergence.

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We strive to enhance the lives of individuals facing these challenges, along with providing support for their parents, carers, and allied professionals.

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Key Focus Areas:

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  • Education and Awareness: We address the lack of training on these conditions for professionals in education, health, and care. This gap often leads to delayed or missed diagnoses. We aim to improve access to information and education about these conditions.

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  • Member Support: We raise funds to support our members and co-produce activities with them. We also assist some members in accessing specialized therapies.

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  • Research and Collaboration: We stay involved in the latest research and connect with allied professionals and other charities. We promote awareness by speaking at conferences, producing publications, and hosting webinars.

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  • Financial Support: We recognize the financial challenges faced by adults with these conditions, particularly those with limited employment options. We provide support to help alleviate these difficulties.

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  • Wellbeing and Community: We understand how both mental and physical health are affected by these conditions. We promote wellbeing through our events and facilitate peer-to-peer communication, aiming to bring joy back into our members' lives.

Our Founder

Jane Green, MBE

Jane Green MBE is the Chair and Founder of SEDSConnective. In 2023 she was awarded an MBE for services to neurodivergent people and those with related joint hypermobility conditions, including Ehlers-Danlos syndromes. 

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Dr Jessica Eccles 2

Our Patron and Advisor

Dr Jessica Eccles

Dr Jessica Eccles is a Reader in Brain-Body Medicine at the University of Sussex, specialising in brain-body interactions, joint hypermobility, and neurodevelopmental conditions. She holds multiple qualifications and leadership roles, including Co-Director of the HRP Health and Care Research Training Hub and Chair of the Royal College of Psychiatrists' Neurodevelopmental Psychiatry Special Interest Group.

Our Trustees

Monica Collins 1-1

Monica Collins

Joanna Fearnley 1-1

Joanna Fearnley

Kelly Harris 1-1

Kelly Harris

Andrea Sanchez 1-1

Andrea Sanchez

Abraham Ashley 1-1

Abraham Ashley

Katy Brizell

Katy Brizell

Vimala Jayaraman 1-1

Vimala Jayaraman

Our Advisers 

Dr. Kana Grace

Post Doc in neurodivergence Advisor (Japan)

Natalie Gibellini

Alexander Technique Teacher

Cheryl Harris

Dietitian Adviser

Dr. Lhara Mullins

Neurodivergent Academic

& Lecturer in Health Promotion

Dr David Moore

Reader in Pain psychology

Bonnie Southgate

Rehabilitation Specialist

Dr Alan Hakim

Consultant Rheumatologist

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