Kleefstra Syndrome UK Family Conference 2024
The Stronger Together Kleefstra Syndrome UK Family Conference 2024 was held at Wychwood Park Hotel, Crewe, Cheshire on 13th July 2024. The weekend offered a unique chance for families to learn from the expertise of our guest speakers during the formal presentations while being able to ask questions relating to their own individual circumstances during panel sessions or during breakout/networking times. Throughout the weekend families were able to have 1:1 appointments with some of the speakers and also importantly were able to benefit from networking with other families affected by KS to learn from each other’s experiences.
Watch the video below for a snapshot of our event, and use the button to view and gain insights from the individual speaker presentation videos. The conference agenda is available for reference. At the bottom of the page you can find all the presentation PDFs as well as direct links to the videos.
This event wouldn’t have been possible without our guest speakers, the staff of the supervised play area, the professionals who offered 1:1 appointments for our families, and our amazing trustees for organising this wonderful and important event. We would also like to take this opportunity to thank you, the Kleefstra community, who continue to fundraise and make donations to our charity, share information and look out for each other. We are indeed stronger together!
Presentation videos and pdfs:
Journey of Kleefstra syndrome and EHMT1 gene
Professor Tjitske Kleefstra
Video | PDF
Understanding and Reducing Sleep Problems
Professor Caroline Richards, Clinical Psychologist, University of Birmingham
Video | PDF
The Education Health and Care Plan Pathway
Courtney Helliwell, a Local Authority SEND Team Leader (Mum to Florence, age 1, with KS)
Video | PDF
A sibling story
Lucas Heslehurst, brother of Leah Heslehurst
Video | PDF
Developing Feeding and Speech using Oral Placement Therapy (OPT)
Amy Rush, Specialist Speech and Language Therapist
Video | PDF
Sensory Processing Differences
Laura Graham, specialist children and young person’s Occupational Therapist in Sensory Integration
Video | PDF
Managing Behaviour and the Be Well Checklist
Dr Jane Waite, a Senior Lecturer in Psychology at the School of Health and Life Sciences at Aston University
Video | PDF
Kleefstra Clinical Guidelines
Professor Tjitske Kleefstra
Video | PDF
A sibling story
Matthew Watts, Jamie’s older brother
Video | PDF
Mental Health and Behaviour
Dr Stacey Bissell, Assistant Professor at the University of Birmingham, School of Psychology
Video | PDF
Gastrointestinal issues in Kleefstra syndrome
Dr Peter Gillett, Consultant Gastroenterologist at the Royal Hospital for Children and Young People, Edinburgh, Scotland
Video | PDF