Sylvia Adams Charitable Trust
Overview
Current funding programmes include:
- Early year's preventative work in England and Wales - not applicable to NI
- Supporting and informing families and communities particularly affected by autosumal recessive conditions - "Breaking Down Barriers"
- Development work in Kenya, Tanzania and Uganda - not open to applications as will be allocated to organisations and work the Trust already has an interest in.
Breaking Down Barriers Scheme
Breaking down Barriers is the programme funded by the Trust to enable organisations supporting families with genetic disorders, with a particular focus on autosomal recessive conditions, to reach out more effectively to those communities that are particularly at risk but currently underserved.
Alstom Syndrome UK, previously funded by the Trust for its work to reach more people from South Asian communities, now provides the management for Breaking down Barriers. The following organisations are the current members sharing experiences and expertise to improve their capacity to reach those communities at increased risk of inheriting genetic conditions:
- AKU
- Albinism Fellowship
- ALEX (formally ALD Life)
- Alstrom Syndrome UK
- Ante Natal Results and Choices (ARC)
- Ataxia UK
- Bardet Biedl Syndrome UK
- Charcot-Marie-Tooth
- Cystic Fibrosis
- Ectodermal Dysplasia Society
- Ehlers Danlos Support UK
- Firvale Community Hub, Sheffield
- Gauchers’ Association
- Genetic Alliance UK
- The Haemochromatosis Society
- Huntington’s Disease Association
- Jnetics
- Luton Parent Carers Forum
- MACS
- Metabolic Support UK
- Muscular Dystrophy UK
- Niemann Pick UK
- Rare Revolution
- Sickle Cell Society
- SWAN UK
- UK Thalassaemia Society
- Walking with Giants
- Wellchild
- Wolfram Syndrome
Outcomes sought from this programme:
- Increased awareness of cultural issues amongst patient organisations, support groups and medical professionals
- Patient organisations and support groups, existing and new, better equipped to support diverse communities and those not able to express their needs directly
- Improvements in services and practices that are fully integrated into patient organisations
- Families reporting that they feel better supported
- Educated patient groups who are better able to manage their condition effectively and lead a better quality of life
- Empowered patient groups who know of the reproductive options available to them and the consequence of carrier status
- Increased participation in genetic counselling and increased diagnosis
- Improved general awareness of genetic conditions
- Comprehensive guidelines produced to help break down the barriers experienced by families and which can be used throughout a range of different services
The long term aim of Breaking down Barriers is to see fewer children born with genetic disorders, in particular autosomal recessive conditions, in those families and communities most at risk. To help achieve this Breaking down Barriers seeks to include more patient organisations and a wider audience.