| Name | Position | Relationship | Contact |
|---|---|---|---|
| Steven Ho | Chair | Parent | |
| Simon Howard | Vice-chair | Parent | |
| Leanne Howie | Secretary | Parent | |
| Peter Hughes | Treasurer | Grandparent | |
| Esther Freeman | Newsletter Editor | Parent | |
| Jeremy Kirk | Consultant Paediatrician | Specialist | |
| Gail Deuce | Principle MSI Consultant Teacher | Specialist | |
| Martin Stevens | Adult with CHARGE | Adult with CHARGE | |
| Lianne Gray | Parent | ||
| Claire Vincent | Parent |
Last updated: 12/08/2017
Posted on Wednesday 6 April 2022
CHARGE syndrome, which affects approximately one in 10,000 newborns worldwide, is associated with neurological and behavioural conditions like intellectual disability, attention deficit disorder, conv…
Posted on Tuesday 22 March 2022
A teenager who helped thousands of people learn British Sign Language (BSL) during the first Covid-19 lockdown is being turned into an animated character in new lessons.
Posted on Tuesday 11 January 2022
Taidgh Hughes with family and friends will be making an epic walk along the Jurassic coast in memory of his son that passed away having been diagnosed with CHARGE Syndrome which is a rare genetic dise…
Posted on Tuesday 8 December 2020
Study looking at a range of behaviours, skills and impairments in CHARGE syndrome.