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Family Weekend at Thomley

Saturday 18 and Sunday 19 June 2022

We look forward to welcoming you to our Family Weekend at Thomley, on Saturday 18 and Sunday 19 June 2022! 

 

This fun event is a great place to meet and share experiences, as well as attend talks and workshops to learn about Fragile X and practical strategies to help in day-to-day life.

 

This year sessions will include: medication and trials with Dr Andrew Stanfield; managing anxiety with Dr Hayley Crawford; fathers and Fragile X; 'Freedom to Thrive' project - setting up an inclusive community. 

 

The agenda for the weekend is available below in FAQs (or click button below to download a copy).  In addition to our programme of talks and workshops about Fragile X, Thomley has organised a range of indoor and outdoor activities for our members, around the site.

 

 

 

There will also be some activities which are bookable on the day, such as cookery and sensory room.  You are welcome to join in with as many (or as few) of the talks and activities as you wish throughout your time at Thomley.

 

(Please note that for reasons beyond our control, we may need to alter the programme of talks and/or activities.) 

One of our family members explains why Thomley is special to them:

"Thomley is a special place for our family.  We'll often ask the kids "What do you want to do today?" They'll reply with, "Go to Thomley!" It is no wonder as it is filled with fun and exciting things to do. Each room is another adventure with lots of activities. From quiet calm corners to outdoor train rides and excellent ball pits. From an open field full of fun stuff to a music room jam packed with instruments. It has something for all interests and preferences. We're already counting down the days and can't wait to meet up with other members and swap stories and share similar experiences."

Spaces are limited and this event is likely to fill up quickly, so make sure to book soon if you wish to join us.  We may need to run a waiting list.

Find out more information in our FAQs section below, and register for your free place/s here: 

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The Thomley Centre

The Thomley Centre is "a place for people of all abilities and disabilities.  We provide an exciting site for disabled people, their families, carers and friends.  We support people at any stage of their diagnostic journey, whatever their additional needs."  

 

Take a look at our photos of Thomley below!

  • Study into the social and emotional wellbeing of women with the Fragile X premutation (University of Surrey)
    Women with the Fragile X Premutation University of Surrey study into the social and emotional wellbeing of women with the Fragile X premutation University of Surrey is currently looking for women with the Fragile X premutation to take part in their new research on social and emotional wellbeing. The accompanying flyer (below) contains more information about what participation would entail. In addition to completing some online and in-person tasks, participants will also have the opportunity to share their experiences of living with the Fragile X premutation. If you have any questions or would like to participate, please email gillian.hughes@surrey.ac.uk
  • BEOND (Behavioural and Emotional Outcomes in Neurodevelopmental Disorders) Study (Survey)
    We have been asked to inform you of a new study being run by the Cerebra Network, called the BEOND (Behavioural and Emotional Outcomes in Neurodevelopmental Disorders) survey. The survey is for parents and caregivers of children and adults with rare genetic syndromes, including Fragile X Syndrome, and neurodevelopmental conditions. You will be asked to respond to a variety of questions. Through your answers, the researchers will learn more about behaviour, wellbeing, emotion, cognition and health in children and adults with Fragile X Syndrome, as well as understanding more about access to support, service use, and family wellbeing. This ambitious survey will be repeated several times over the next few years. The researchers hope that many families will choose to take part at multiple points so that they can see how responses change over time and get a much better insight into development in Fragile X Syndrome across the lifespan. Researchers across the Cerebra Network will be using the wealth of data collected in the BEOND study to address the concerns of families with Fragile X Syndrome. Those families who completed the survey will receive individualised feedback reports to put that information back into your hands. There is a QR code and a link included in the flyer (below) which will take you here: https://www.cerebranetwork.com/beond-fxs where you can watch a video about the study, read a brief description and click through to the survey.
  • Views and actions concerning the political engagement of people with intellectual disabilities
    We have had notification of some research being conducted as part of a PhD at the University of Wolverhampton. It concerns the political engagement of people with learning disabilities. What limited research there is demonstrates a significantly lower voting rate among people with learning difficulties than for the general population. While some people with learning disabilities actively choose not to vote, there is evidence that some want to vote but do not do so. Researchers are looking for family carers of people with learning difficulties, support staff of people with learning disabilities and members of the general population who do not fit into either of the two other groups to complete their survey. This study is interested in whether there are any relationships between peoples’ political opinions and attitudes towards people with learning disabilities. The research will also consider how people have helped people with learning disabilities to vote at recent UK general elections. Researchers hope to better understand the links between underlying political opinions and attitudes towards voting by people with learning disabilities. It will give greater insight into people with learning disabilities’ election experiences. It may also help to improve their experiences. Participants will be asked to complete an anonymous online survey. Participants will also be asked questions about any experiences they may have of assisting somebody with a learning disability to vote in a recent general election. The survey is accessed via a generic link. It takes 15-20 minutes to complete and is entirely anonymous. No previous knowledge of voting is required. To be involved participants must be aged 18 or over and have lived in the UK for 12 months or more since 2018 (to ensure some knowledge of the British system/voting process). Participants are first asked to read through an information sheet, which gives them more details about the research. They are then asked to complete a consent form before completing the survey. At the end of the study there is a debrief form giving participants more information about the research. https://wolverhamptonpsych.eu.qualtrics.com/jfe/form/SV_ehyCmYCwqjrbfXU The first page of this is the information sheet, which includes more in-depth details about the study. This can be downloaded here. Clicking through to the second page will display the consent form and the survey.
  • Clinical Trial of Cannabidiol gel (RECONNECT study)
    This is a clinical trial for 3-17 year olds with Fragile X Syndrome which aims to test the safety and effectiveness of a possible new medicine which is currently being developed by a pharmaceutical company called Zynerba. The medicine being trialled is a cannabidiol gel which is rubbed into the skin twice daily. In previous studies the gel has been found to potentially help with irritability and social anxiety / avoidance in some people with Fragile X Syndrome. The RECONNECT study aims to confirm the results seen in these earlier trials. This research is being organised by Zynerba (the company who make the gel), and the Chief Investigator in the UK is Dr Andy Stanfield from the Patrick Wild Centre at the University of Edinburgh. As well as the UK, the study is also happening in Ireland, Australia and the USA. The trial is a double-blind randomised placebo controlled study. This means that some participants will be given the active gel, while others will be given a placebo gel (i.e. a gel with no active medicine in it). This allows the researchers to see if the active medicine works better than the placebo. The study treatment period is 18 weeks long in total and during that time you would be expected to attend 4 appointments in person and 4 appointments online. At the visits there will be various assessments carried out, including questionnaires for carers and physical checks for the young person with Fragile X Syndrome (including occasional blood tests). There are 5 study sites planned for across the UK: London, Leicester, Edinburgh, Manchester and Cardiff. At the moment, three of the sites are ‘open’ (starting to recruit participants) – London, Leicester and Manchester. As more sites are opened we will update this information. Any travel costs incurred will be reimbursed by Zynerba. If you are interested in finding out more about the study then there is a study website – www.fragilexhelp.co.uk – with more information. You can enter your details on this website if you want to be contacted to find out more about the study. Alternatively you can get in touch with the research teams at any of the open sites directly via the contact details below: Cardiff contact details will be added when the site is open Edinburgh contact the Patrick Wild Centre directly at pwcresearch@ed.ac.uk Leicester Professor Julian Barwell, Julian.barwell@uhl-tr.nhs.uk, 07929 375 231 London Leda Bianchi, RECONNECT-Trial@kcl.ac.uk, 07999 981 657 Manchester Myfanwy Rawson, genetics.research@mft.nhs.uk, 0161 701 2788 Dr Andy Stanfield from the Patrick Wild Centre is also happy to be contacted if you have any questions about the study (andrew.stanfield@ed.ac.uk).
  • The Patrick Wild Centre eHub
    A study to collect detailed information about large groups of people with Fragile X. Dr Andy Stanfield and Dr Sonya Campbell are recruiting for a new online study, called the Patrick Wild Centre eHub. The aim of the eHub is to collect detailed information about large groups of people with Fragile X, the premutation and a comparison group using short, widely used surveys which will then be repeated every 2 years. The idea is to gradually build up a rich picture about how these conditions affect people and how this might change over time. More information about the study is available hereand you can sign up directly here.
  • Public Advisory Panel for parent carers of children with intellectual disabilities
    Join a new public advisory panel and help shape research for parents who care for children with intellectual disabilities Are you a parent of a child aged 16 or below with a diagnosis of intellectual disability? If so, you can help shape research exploring general practice services for parent carers. You can find out more below. If you have any questions, or would like to join the panel, please email the Lead Researcher, Nicky Thomas, at the University of Warwick: nicky.thomas.1@warwick.ac.uk
  • Project Title: Shape Research, Change Lives
    Project Description: Emily Farran and Laura Cristescu, in collaboration with Jo Van Herwegen, Liz Pellicano, and Gaia Scerif are working on a project on understanding the priorities for research for individuals with Down Syndrome, Fragile X Syndrome and Williams Syndrome, and their communities. For research to best have an impact on improving lives, we need to better understand the needs of your community and what matters to you; you are a key part of this project. The findings will drive new directions and real-life impact on Fragile X Syndrome research. We would like to speak to individuals with Fragile X Syndrome (from 10 years old to adults) about what is important to them and what they would like to find out about Fragile X Syndrome, via an online videocall. If you are interested in taking part, we would love to hear from you. Please register your interest at the following link: https://surreyfahs.eu.qualtrics.com/jfe/form/SV_8DtfhT40nl978DY. If you have any questions, please do not hesitate to contact Laura at l.cristescu@surrey.ac.uk.

FAQs


You'll find further information and answers to some commonly-asked questions below.  If you have any unanswered questions, please get in touch and we'll be happy to help!

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