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Status
Received: on time
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Income
£0.5K
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Spending
£3.0K
Public benefits
Benefits from our organisation purposes 1." Fundraising for research into cure and treatment" Beneficiaries: All who have condition known as Duchenne Muscular Dystrophy worldwide Benefits: Persons with the condition will benefit from treatments 2. "Giving practical & financial help" Beneficiaries: The two Grant boys who suffer from the
disability known as Duchenne Muscular Dystrophy and anyone locally (within Northern Ireland) who suffers from the same illness can potentially benefit Benefits: Specialised wheelchairs, transport vehicles, physio sessions, drugs and other palliative care deemed necessary. 3. " Lobbying for improvements in Standards of Care for Duchenne Muscular Dystrophy patients in local hospitals and implementation of internationally accepted best practice Standards of Care by GP's and hospitals in order to improve life expectancy" (including Specialists Centres of Excellence) Beneficiaries: The Duchenne Muscular dystrophy community in Northern Ireland Benefits: Improvements in treatment of Duchenne Muscular Dystrophy in local hospitals. 4. "Raising awareness of Duchenne Muscular Dystrophy at local, national and governmental level through information pamphlets and lobbying local councillors, MLA's MP's and government ministers." Beneficiaries: The Duchenne Muscular Dystrophy community in Northern Ireland Benefits: General public, councils, and government are made aware of the needs of these persons with Duchenne Muscular Dystrophy. 5. Raising awareness of need for more funding" Beneficiaries: The Duchenne Muscular Dystrophy community in Northern Ireland Benefits: Treatments improved. New treatments offered on the market. Hope for a cure. 6. Raising awareness of need to simplify means of clinical trials for genetic medicines that will bring treatments to market much more quickly. Beneficiaries: The Duchenne Muscular Dystrophy community in Northern Ireland Benefits: More treatments come on the market and delays on treatments coming to market more quickly These benefits are (will be) demonstrated by feedback from beneficiaries in the form of 1. Annual report of progress in research. 2. Reports to committee by parents of beneficiaries, 3. Reports in quarterly publications from Action Duchenne and Muscular Dystrophy Campaign. The purposes of our charity do not lead to any harm. The only private benefit flowing from our organisation purposes to date has been to the 2 Grant brothers. These benefits are necessary due to the NHS not providing this support. For example these benefits are in the form of bespoke wheelchairs, other specialised equipment and regular physiotherapy sessions. Proposals for private benefits are discussed and voted on by the Killowen Fundraising Group committee in the same way as with all expenditure of funds. It is hoped that other parents of children with Duchenne Muscular Dystrophy or adults with this conditons will apply for benefits in the future.
... [more] [less]What your organisation does
Fundraising for research into cure and treatments for Duchenne Muscular Dystrophy looking for improvements in standards of care for duchenne patients Looking for improvements in standards of care for Duchenne patients in local hospitals and implementation of internationally accepted best practice standard of care by GP's and hospitals in order to
improve life expectancy Raising awareness of Duchenne at local, national and government level through information pamphlets and lobbying local councillors, MLAs, MP's and government ministers. Raising awareness of need for more funding for research raising awareness of need to simplify the means of clinical trials for genetic medicines that will bring treatments to market much more quickly
... [more] [less]The charity’s classifications
- The advancement of health or the saving of lives
- The relief of those in need by reason of youth, age, ill-health, disability, financial hardship or other disadvantage
Who the charity helps
- Children (5-13 year olds)
- Men
- Parents
- Physical disabilities
- Preschool (0-5 year olds)
- Youth (14-25 year olds)
How the charity works
- Advice/advocacy/information
- Counselling/support
- General charitable purposes
