MMT Epilepsy Alarms Programme
MMT funds specialist epilepsy alarms, which alert parents to seizure movement in their children during the hours of sleep. They reduce sleep deprivation and have an immediate impact on the quality of life of parents and the family, potentially saving a life or preventing serious injury.
January 2012 - November 2012
Charity information: Muir Maxwell Trust
Alarms are not advertised, but word of mouth and referrals from medical professionals means we are currently experiencing up to 80 enquiries a month and our waiting list (capped at 200) has been growing steadily since autumn 2010 as the requests have been outstripping our available funds. We rely solely on fundraising events and the generosity of our donors. The cost is considerable as each specialist alarm costs the Trust £500 (retail cost £728)-but MMT makes them free to the family.
Every £500 we raise helps one child with epilepsy and their family. If we can raise a total of £40,000 (including the matched funds) from The Big Give then we can help an additional 160 families in the UK during 2012.We know from feedback and an ongoing survey of recipients, that:
Alarms reduce sleep deprivation and have an immediate impact on the quality of life of parents and the family.
They provide additional protection for children, which can save their lives or prevent serious injury.
To improve the quality of life of families caring for a child with epilepsy.
Activities» To fund and distribute life-changing epilepsy alarms to UK families.
What success will look like
Success will be...
Reducing sleep deprivation and having an immediate impact on the quality of family life
Providing additional protection for vulnerable children.
The reassurance that an alarm provides has a lasting impact on family life. Parents have a much better night's sleep in the knowledge that the alarm will alert them if their child is having a seizure, reducing the need for a 24/7 vigil.
It often means that an older child can have their independence restored, which can greatly improve their wellbeing.
Alarms can assist in better monitoring the condition long term, enhancing effective management of behaviour and medication for the best outcome.
A)an alarm may not be suitable for an individual child –we ask a range of simple screening questions before progressing each enquiry
B)the alarm may not be effective – we supply a robust, tried and tested alarm with an excellent aftercare service
C)our supplier cannot keep up with demand – we keep in touch with them on a daily basis and in 7 years this hasn’t happened
D)due to our waiting list, families may have to wait months for an alarm – we keep them updated and we fundraise constantly
We regularly update our donors by letter and email and if requested, we can supply case studies and arrange visits.
We also regularly update our website with the latest news.
Budget - Project Cost: £40,000Loading graph....
Amount Heading Description £40,000 Epilepsy Alarms Eighty alarms to families
Vulnerable children with complex and severe epilepsy throughout the UK, no matter what their location or circumstance.
Families and carers looking after children with epilepsy.
We are the leading UK paediatric epilepsy charity and we have 7 years experience of successfully distributing epilepsy alarms.
Medical professionals and other epilepsy charities provide referrals to us.
However, demand for the alarms is currently at an unprecedented level, which is why we are seeking additional support via the Big Give to help us to provide an extra 160 alarms during 2012.
We have robust systems and procedures in place and we have the capacity to manage the programme.
Read more about the Charity running this project.
Family Liaison Manager
Takes enquiries for alarms from families, medical professionals and other charities. Coordinates the distribution of alarms, liaises with supplier.