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Covid19 support for Duchenne Families

by Duchenne Family Support Group in Eastbourne, England, United Kingdom

Covid19 support for Duchenne Families

£130

raised of £1,000 target

6

supporters
13% 15 days left
Flexible funding – this project will receive all pledges made by 7th October 2020 at 11:59pm

To enable our Development Officer to continue to help and support our families through these unsettled times

by Duchenne Family Support Group in Eastbourne, England, United Kingdom

We are a very small charity supporting families across the UK with a child or young adult with the life-limiting condition Duchenne Muscular Dystrophy.  A lot of these families are still being shielded at the current time and need extra support to help them get through the pandemic. We run an essential helpline which is available 24/7 and a social media page which offers direct support to these families to ask for advice, emotional support or any questions relating to government initiatives, as they unfold. Care and support are the core objectives of our charity along with our subsidised family days out and holidays. The latter are, of course, sadly not happening at the moment. We send out a quarterly newsletter full of useful information for all our families, along with stories from the families themselves and articles to help and encourage them as they deal with this life-limiting condition. This is a great source of positivity and support, especially in difficult times such as we are all currently experiencing. We work with other, bigger charities but many of these have furloughed staff and their resources are limited. The bulk of this work is done by our Development Officer who works across the rare disease community to support the families by working directly with them, clinicians and scientists. We also campaign with government and statutory bodies to make sure that our families needs are met during this time and moving forward. Therefore, we wish to apply for funding to enable us to continue our valuable support of these families across the UK and to ensure that the vital work of our Development Officer can, not only continue, but expand to address the changing needs of our extremely vulnerable families. Thank you.

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