The Down Syndrome Development Trust

Director: Sen Smallwood

Sen Smallwood

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:

Kristina Veasey

Kristina Veasey is a visual artist whose practice centres on lived experience and social engagement. She is formerly a diversity and equalities consultant/trainer of 20 years, with a background in direct participation and advocacy work with children and young people.

Much of Kristina’s work has been with disabled children and adults, and marginalised groups.

Kristina is a member of the disability rights movement, campaigning for disability equality, inclusion and leadership. No stranger to making change at grassroots level, she is also the founder of Seaford Refugee Support, and the co-founder of both Seaford Family Focus Group and Sussex Wasps disabled sports club.

Amazingly, Kristina is also a retired Paralympian having represented GB in wheelchair basketball at both the Sydney 2000 and Athens 2004 Paralympic games. In 2008 she became Paralympic ambassador for Amnesty International and in 2012 she carried the Paralympic torch.

Kristina has been a trustee of DSDT since its inception, and is proud to be a part of such a dynamic and passionate organisation.

Joanna Pike

Joanne Pike

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 Smallwood

Andrew is father of Hana and also Finn 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.

Guy Passey

Guy is a graphic designer and lives with his family in Sussex. Guy’s interest in the charity came about due to his youngest son Dan having Down syndrome. He has been involved with DSDT for a number of years, volunteering in various roles and activities, Guy continues to be a strong ambassador for DSDT and was delighted to join the board of Trustees in 2019. He is proud to be involved with the invaluable work of the organisation and actively supports the initiatives and ongoing developments of the Trust.