We make sure that all money fundraised for ALD Life goes directly to our families, events and research. The profits from our three charity shops pay for all administration costs and my services are purely voluntary which ensures that you know anything you raise for us will go straight where it counts. If you wish to view our accounts, these can be found on the Charity Commission website at http://www.charity-commission.gov.uk.
We provide grants for families during bone marrow transplant and bereavement, we will also help fund care costs and equipment when no other alternative is available. The majority of our funds are used for these grants and to hold our two annual events: the AMN Day which brings together adults affected by ALD and AMN to discuss new research innovations and offer practical information, and the ALD Family Weekend – an informal event to bring together families and individuals affected by ALD and AMN to meet, help and support each other in luxurious surroundings as a break from the day to day difficulties of living with ALD and AMN.
We have started our programme to give funds for research projects to find new treatments and a cure for our conditions. We have a strong network of relationships with the scientists working on treatment for ALD and AMN at international level, so the money will go directly to where it really matters.
We work for designing new innovative service to better respond to the complex needs of our patients and families, logistically, emotionally and psychologically. We are deeply committed in providing high quality service to patients during all their journey through the disease.
If you need financial help of any kind or would like to nominate a hospice, hospital ward or other organisation that has been particularly useful to someone with ALD or AMN please do not hesitate to ask.