Down Syndrome Development Trust
My involvement with Down syndrome issues came about after my second child Finn was born with the condition in 2007. My husband Andy and I knew that we needed to get as much information as possible to help us understand the problems Finn would be faced with in order to provide the best support possible. As proactive parents we set out in the pursuit of knowledge for therapies that would make an impact.
We gained useful information from a variety of sources and we soon discovered that specific early interventions targeting all areas of development was key to achieving the best outcome for Finn. It was soon apparent that the resources needed were in short supply within the local community, so in Nov 2007 eight months after Finn was born, I initiated monthly drop-in sessions in the local leisure centre for parents of children with a variety special needs. From those monthly drop-ins grew the charity Seaford Down Syndrome and Special Needs Support Group (seaford-dssnsg).
As time went on the charity built enrichment sessions and support services targeting the key areas of development along with providing training for professionals. seaford-dssnsg is still a thriving resource and provides vital services to families within the local community.
I stepped down as chair and manager in November 2012 to focus more fully on DS intervention and supporting DS science and the professionals working around this condition. We have been very busy and have had great success building partnerships and delivering innovative services to people and families living with Down syndrome. I know there is still lots of work to do but I am confident by working together with families and professionals we will make a difference by providing the best range of specialist services for children and adults living with DS.
Our Board Members at the Down Syndrome Development Trust include:
Joanna lives with her husband Jeff and four children Ellie, Liam, John and Samantha her second born child Liam has Down syndrome. Joanna is an artist and writer and brings a variety of creative and practical skills to the board. She is actively supporting the initiatives of the Trust and promotes with enthusiasm the innovative ideas and positive ethos.
Andrew is father of Hana age 16 and Finn age 12 who has Down syndrome. Andrew’s skills are in site management of commercial building projects mainly in schools, hospitals and some private sector establishments. He transfers his high quality effective management skills to the Trust’s work and is participating extensively in the ongoing development of the organisation’s framework. He continues to support all the projects alongside his other work commitments.