We would also like to thank the Sylvia Adams Charitable Trust Trustees, in particular Jane Young who has been a wealth of knowledge, experience and challenged us every step of the way.
(Jane Young pictured on the left with Kerry Leeson-Beevers on the right)
Jane gives her thoughts:
“In 2016 The Sylvia Adams Charitable Trust and Alstrom Syndrome UK (ASUK) developed Breaking Down Barriers: Understanding Genetics Together, by building on work previously funded which enabled ASUK to reach those UK communities and families from South Asia suffering from this specific rare genetic condition. This work raised awareness, increased referrals and provided access to specialist services for previously underserved communities.
BDB has taken this approach further on a national scale supporting a consortium of charities so that they can effectively reach all communities at risk of genetic conditions.
The Trust has continued to be the main funder of Breaking Down Barriers, because its model enables its member organisations to effectively reach a diverse community of patients and families, supporting their access to health care, and their understanding of genetic conditions. For us all in the UK, this remains of critical importance.
The Sylvia Adams Charitable Trust is a time limited funder and by the end of 2022 will be closing down. We leave Breaking Down Barriers, under the careful management of ASUK,
as a leader in the provision of more equitable health provision, with over 60 member organisations working with families from all communities where there are genetic conditions. Breaking Down Barriers is now seen nationally as a source of tried and tested expertise.
If other funders are looking to work to improve equitable health provision in the UK, through an organisation which is enabling charities of all sizes and across the country to cooperate and learn from each other, there could be no better choice than to fund Breaking Down Barriers.
How many other funded projects have cooperation and support between charities at their heart?
A lot has been achieved. At the start ASUK was looking to reach out to less than 100 families across all communities, and now the BDB membership collectively supports over half a million people plus families, carers and healthcare professionals.
But there is still much to do, and we sincerely hope other funders will see the value of supporting this work into the future, until we have equitable provision.”
The Sylvia Adams Charitable Trust, 2022
In 2020, The National Lottery Community Fund, funded Breaking Down Barriers to offer training and support to its members during the pandemic.
Covid-19 has had a negative impact on many of the organisations we work with. Thanks to the National Lottery funding, we have been able to adapt quickly to offer support and training to ensure the organisations that we work with are sustainable into the future.
At Breaking Down Barriers, we believe that patient organisations and support groups have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population.
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