The Alfie Milne Lymphangiomatosis Trust was set up to give sufferers worldwide a support network which could help them and their families to learn from the experiences of others and gain strength in numbers. Working with existing bodies, this is where Alfie’s Trust aims to make a difference.
Alfie’s parents Tracy and Mark Milne began campaigning to raise funds and awareness in September 2011. Alfie’s Trust became a UK, registered charity, in May 2012. They believed that research was vital in order to give their son and others with the same condition a future.
Today, the Trust works in partnership with other patient organisations including the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) in the US and in Europe.
Together, we provide support and information to families around the world who are affected by the condition. Alongside the LGDA we offer a Facebook Support Group where patients and their families can connect to discuss the challenges they face and gain support from one another.
The funds we raise do not directly benefit Alfie or any other individual. Instead, we grant funds for research projects and patient support projects all over the world. By doing so, we aim to help all sufferers and their families – now and in the future. We follow a formal application process to make sure we are using our supporters’ money in the best way possible.