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Removed
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This charity was removed from the register on 10 Sep 2018
- Charity no. 100407
- Date registered. 08/09/2014
Public benefits
1. The relief of those in need by way of children and young people aged 18 and under with a disability which may be life limited in Northern Ireland by the provision of the best quality of equipment as soon as possible and which the health service may be unable to provide. The direct benefits flowing from this purpose are that the quality of life
and wellbeing of the children and young people will be improved as delays in provision of suitable equipment at the right time can lead to a deterioration in their condition and impact on their physical condition and mental health. There is also a benefit to their families and carers as the equipment provided will enhance the life of the whole family both in the home and social environments by enabling the child or young person to become more independent and confident and to take part in social events. This has been evidenced by testimonies from parents both in person and by email saying how beneficial the equipment has been and how much it has improved the quality of life of their child or young person and the benefit they have also received as a family. Also there is the relief of financial stress and hardship to the family if they are unable to provide this equipment themselves. 2. The advancement of health by ensuring that proper standards of medical care and support are provided for those affected by neuromuscular conditions in Northern Ireland. The direct benefits flowing from this purpose are that improvements in care and support for children and young people in Northern Ireland with neuromuscular conditions will have an enhanced quality of life, improved standards of care with better access to possible treatments. An example of this is The McCollum Report, named after Christopher McCollum, issued by the All Party Group on Muscular Dystrophy at Stormont in July 2012 and which contains 15 Recommendations to improve care and support for everyone in Northern Ireland with a neuromuscular condition. 3. The advancement of education, based on our experience, to government, the health service, the general public and especially families with Duchenne Muscular Dystrophy and other neuromuscular diseases in Northern Ireland of the effects that delays in the provision of equipment can have on the quality of life of children and young people. The direct benefits flowing from this purpose are that children and young people will receive the equipment, care and support they need at the appropriate time and that their condition does not deteriorate as a consequence of not providing the equipment when needed. In the advancement of education in the subject of Duchenne Muscular Dystrophy and its implications for the families of those suffering from the condition we will promote and give support to the funding of medical research into finding a treatment or cure for Duchenne Muscular Dystrophy. The benefit from this to those diagnosed with Duchenne Muscular Dystrophy would be an improvement in quality of life due to the ability to remain mobile, and also a longer life expectancy. There will be no harm arising as a result of any of the purposes of the organisation. The only private benefits which will flow from the purposes of the organisation will be how our volunteers have, as a result of their involvement, acquired increased knowledge of the impact of disability and knowing they have improved the quality of life of a young disabled person aged 18 and under in Northern Ireland by taking part in fundraising activities to raise funds for equipment. Also how families and carers of the children and young people feel supported in that they are not left to cope on their own. Everyone involved in the charity does so on a voluntary basis.
What your organisation does
The Christopher McCollum Fund was set up in 2008 in memory of Christopher McCollum who had Duchenne Muscular Dystrophy, a life limited disability and died in September 2001aged 16. In his latter years he experienced major delays in wheelchair provision which had a profound effect on his quality of life. As a testimony to his courage and
determination the charity aims to promote public awareness on how delays can impact on the quality of life of young disabled people. The charity aims to improve the quality of life of young disabled people aged 18 and under in Northern Ireland by providing or assisting in the purchase of wheelchairs and other specialist mobility equipment to enhance their mobility, independence and quality of life. The organisation aims to advance education with government, the health service and the general public in respect of Duchenne Muscular Dystrophy and other neuromuscular conditions by raising awareness as to why delays in the provision of equipment can have an impact on health and quality of life and to ensure proper standards of medical care and support are available in Northern Ireland. We will promote and give support to the funding of medical research into finding a treatment or cure for Duchenne Muscular Dystrophy
The charity’s classifications
- The advancement of education
- 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
- Carers
- Children (5-13 year olds)
- Parents
- Physical disabilities
- Preschool (0-5 year olds)
- Youth (14-25 year olds)
How the charity works
- Advice/advocacy/information
- Disability
Charitable purposes
The Association is established to advance education and for the relief of disabled people aged 18 or under, primarily but not exclusively, those with life limiting disability in Northern Ireland (hereinafter called “the beneficiaries”) without distinction of ethnic identity, gender, sexual orientation, nationality, political or religious opinion, by associating the local authorities, statutory and voluntary organisations in a common effort to improve the conditions of life for the said beneficiaries and in particular to: a) Provide or assist in the provision of wheelchairs, mobility aids and other facilities for the beneficiaries to increase their mobility, independence and conditions of life; b) Promote awareness of the importance of wheelchairs for disabled children; c) Advance education in the subject of Duchenne Muscular Dystrophy and its implications for the families of those suffering from the aforementioned condition and to promote or assist in research into the management of Duchenne Muscular Dystrophy and to support organisations promoting charitable research into Duchenne Muscular Dystrophy.