The national charity, based in Shropshire, has received £15,000 from the VINCI UK Foundation to address the bullying and sense of isolation which many with Noonan Syndrome can experience.
The Noonan Syndrome Association is the only organisation working for families affected by Noonan Syndrome in the UK. There are no other opportunities for the UK community of those affected by the condition to come together.
Noonan Syndrome is a complex genetic disorder present in 1 in 2000 births. Varying in presence and severity it can have a major impact on lives. For children, these differences can lead to bullying by peers and subsequent isolation. Sometimes a lack of understanding by support workers, teachers and family members can accentuate matters. In adulthood symptoms can develop affecting employment, domestic life and even be life-threatening.
The Noonan Syndrome Association’s work encompasses the entire family, including parents and siblings but also medical, caring and education professionals. The £15,000 grant towards the ‘Be Your Self’ project aims to bring together the community of families, and especially children and young people, affected by Noonan Syndrome across the UK. The aim is to address the sense of isolation that many with Noonan Syndrome experience by building self-confidence, developing inter-personal skills and team working skills. Meanwhile their parents and carers learn from a team of medical experts and educational specialists, including how to successfully engage with schools over their child’s experience at school and new methods of alleviating behavioural, physical and medical problems.
“Ours is a small charity with ambitious aims. We already work with over 600 families affected by this complex genetic disorder, but this is growing every day. We are extremely grateful to the VINCI UK Foundation for their funding and support and we are excited about the major difference it will make to our ability to help children and young people overcome the challenges presented by this condition” explains Peter Clarke, Charity Secretary for The Noonan Syndrome Association.
In addition to the financial support, Noonan Syndrome Association will receive practical help from VINCI Construction Grands Projets employee Pierre-Edouard Denis who is serving as sponsor for the project. Mr Denis brings substantial experience in project management from his role as a Materials Manager on the Tideway Super Sewer Project in London. Mr Denis explains: “I am very pleased to be part of Noonan Syndrome Association and to support children and young people affected by this poorly known genetical disorder. I really want to thank VINCI UK Foundation for this grant which will benefit the association to originate a gathering between children, young people, siblings, parents and medical staff coming from all over the UK. This annual sharing moment is more than necessary for the development of everyone suffering of Noonan Syndrome – they can meet each other and understand that they are not alone facing that disease.”
ABOUT VINCI UK Foundation
The original VINCI Foundation was established in France in May 2002. Since then it has supported more than 2,500 charitable projects, each receiving an average grant of £10,000 and the support of up to four employees. The Foundation distributes more than £3.3 million globally to good causes every year.
The VINCI UK Foundation was launched in early 2016 with the specific goal of promoting social cohesion and fighting exclusion and isolation in the UK and the Republic of Ireland, by combining the skills of VINCI staff with financial assistance to be a long term partner for the community.
More details can be found at www.vinci-uk-foundation.co.uk.