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:
An integral part of the Great Britain wheelchair basketball squad for 10 years, Kristina is a two-time Paralympic athlete. She competed in both the Sydney 2000 and Athens 2004 Paralympic Games. In addition to a bronze medal at European Championships, Kristina also won two silver medals at the World Cup.
She retired from sport in 2008 becoming Amnesty International’s Paralympic ambassador during the Beijing Games. In 2012 she was selected as torchbearer, helping to carry the Paralympic flame from Stoke Mandeville to the Olympic Park. In the same year she managed to combine her love of sport with her work as an artist, earning her the London 2012 Inspire Mark for her project ‘Beyond the Torch Run’.
Kristina is an advocate of the social model of disability and is a campaigner of disability rights. Her interest in the Disability Movement has also influenced her art work, making her pieces a positive and interesting way to stimulate discussion about equality and assumptions.
Kristina has over 15 years experience working with disabled people in coaching, participation and advocacy settings. Drawing on this and her Paralympic experience, she now runs her own consultancy business advising and training businesses and organisations on access and inclusion. She also delivers presentations, assemblies and workshops in schools around Paralympics, equality, and positive disabled role models.
Her recent published work has included:
- key contributions to ‘Cultural Shifts‘ a series of essays about disability, success, art, sport and the influence of the London 2012 Paralympics Games (Accentuate)
- key contributor to ‘Art and Sport‘ a publication exploring what motivates and inspires both disabled athletes and artists, and the historical timelines of disability art and sport (Accentuate)
- ‘How to Involve Disabled People‘ a toolkit highlighting best practice for participation in improving access (Accentuate and Tourism South East)
- ‘Access All Areas‘ a toolkit for Local Authorities looking to undertake destination access audits with best practice in mind (Accentuate and Tourism South East)
Kristina also runs Seaford Family Focus Group, a not-for-profit organisation that puts on free community events and projects.
You can find out more about Kristina and her work here – https://www.kristinaveasey.talktalk.net/
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.