Meet Our Families and Professionals Advisors

Whether you are a person living with Fragile X Syndrome, a family member, carer or professional, our Families and Professionals Advisors can offer lots of information on a range of issues relating to Fragile X Syndrome, such as education, speech, language and communication, behaviour, and sensory issues. We can also offer support in other areas such as, filling in claims for Disability Living Allowance (DLA), Personal Independence Payment (PIP) and Employment and Support Allowance (ESA).

 

We would like to stress that all requests for support and information are treated with strict confidentiality.

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Caroline - Child Enquiries

Caroline is the Society's Families and Professionals Advisor managing enquiries relating to children with Fragile X Syndrome. 

Caroline joined the Fragile X Society in 2018, having worked in the voluntary sector for over 25 years supporting families. During this time, she gained a BA Hons with the Open University studying modules including cognitive development, language and linguistics and special needs education. She also had the opportunity to further her studies in autism. She has worked within schools and preschools and worked for nearly 10 years as a Parenting Co-ordinator for a local charity supporting families and their children with a disability. Her role involved providing support and advice over the phone as well as making home visits, attending multi-agency meetings, facilitating support groups and supervising holiday schemes, play clubs and youth groups. Caroline is a trained facilitator for evidence-based parenting programmes for families with special needs children and has devised workshops to meet the expressed needs of parents covering issues such as sensory, behavioural and emotional issues, communication and supporting siblings. Her work has given her an insight into the issues that families face.

You can contact Caroline on 01371 875100 or by email at caroline@fragilex.org.uk. Alternatively, you can reach out for Caroline’s support by filling out the website contact form.

Jane - Adult Enquiries

Jane is the Society's Families and Professionals Advisor dealing with adult enquiries for individuals and families. 

 

Jane was previously a carer support worker for a county wide carer organisation offering support and information to unpaid family carers. She worked for over 12 years as a day service worker in a community-based day service for adults with learning disabilities. In this role, Jane worked on a 1:1 basis supporting adults with mild to profound learning disabilities to access their local community and, through Person Centered Planning, have their say in how they would like to live their lives with the right support and service provision. Both roles have given her experience in liaising with statutory agencies such as Adult Care Services, Health and other organisations from the voluntary sector.

 

You can contact Jane on 01371 875100 or by email at jane@fragilex.org.uk. Alternatively, you can reach out for Jane’s support by filling out the website contact form.