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Status
Received: on time
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Income
£2.1K
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Spending
£4.3K
Public benefits
Syringomyelia and Arnold Chiari Malformation are separate conditions which affect the nervous system but which often happen together. Both are rare conditions. No two people diagnosed with these conditions will have the same symptoms, which range from pins and needles, numbness in limbs, loss of heat sensations; to muscle weakness affecting a
persons mobility, chronic pain, as well as other neurological symptoms. There is no cure for these conditions, surgery if appropriate, may halt progression and ease some of the symptoms. The association gives their members accurate information which gives them an understanding of their condition and as a result they are better informed and able to deal with appointments with medical professionals. This reduces their anxiety levels, and feelings of isolation when diagnosed with a rare disease. In the course of the year we have at least one meeting with a guest speaker, and some other informal meetings in different parts of the province to enable members to meet and offer mutual support. These meetings are open to all people living with these conditions, their carers, and families. Those attending come away better informed and feel the benefit of meeting others living with these conditions. For those unable to attend meetings, our biannual newsletters keep them in touch with the association. The association was able to provide a travel bursary for physiotherapists to attend a Chiari training day organised by a similar charity in England, and plans to offer assistance for other training opportunities for medical professionals in the future. As these conditions are rare it is difficult for a small charity like ourselves to measure the benefit from such training opportunities. A private benefit to medical professionals may arise from the training events that they attend. These benefits are incidental and necessary to ensure benefit is provided to our beneficiaries. Members are currently reimbursed for travel expenses incurred to attend meetings. There is also a fund available to assist members with medical/travel expenses in relation to consultations with private medical professionals, treatments and investigations deemed necessary by their GP, upon application to the charity. As all the current trustees of the association also have these conditions there is a private benefit to trustees as they too attend the support group meetings and they are entitled to claim out of pocket expenses incurred in attending events and in the running of the charity. These benefits are incidental and necessary to ensure benefit is provided to our beneficiaries. To raise awareness of the conditions in Northern Ireland the association are involved with the NI Neurological Conditions Alliance and the NI Rare Diseases Partnership. The above benefits are demonstrated by feedback from beneficiaries.
... [more] [less]What your organisation does
Our charity raises awareness amongst the general public about Syringomyelia and Arnold Chiari Malformation (Chiari) so that people diagnosed with these conditions,their family members, carers and friends have a better understanding.We provide information booklets published by a similar charity in England.Our charity also aims to educate medical
professionals about these conditions and their management.We encouraged local medical professionals to attend Chiari/Syringomyelia training events by offering a travel bursary and will support similar events. Our Helpline is run by volunteers who have at least one of the conditions and a listening ear is most helpful to a person living with these conditions.We organise at least one meeting a year with a guest speaker and some informal meetings around the province to enable people living with these conditions to meet up and offer mutual support.Our biannual newsletters allow us to reach out to all members, including those unable to travel to our meetings and keep them informed.We have a lending library with books and CDs that our members can borrow. With the help of donations and fundraising we are able to reimburse members for travel expenses incurred to attend meetings and avail of the 50% Fund which is available to assist members with medical/travel expenses in relation to consultations with private medical professionals, treatments and investigations deemed necessary by their GP,upon application to the charity.We have created links with related charities in the UK and Ireland and are involved with the NI Neurological Charity Alliance and the NI Rare Diseases Partnership which gives us opportunities to explore and disseminate information with the aim of improving the lives of persons affected by Syringomyelia, Chiari and related disorders.
... [more] [less]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
- General public
- Physical disabilities
How the charity works
- Advice/advocacy/information
- Counselling/support
- Disability
- Education/training
- Medical/health/sickness
