Alfie’s Trust

Taking part in Kiltwalks all over the country since 2015, we know every Kiltwalker in Aberdeen will receive a warm welcome from the Alfie’s Trust team at Pit Stop 5.

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Over the years, the Kiltwalk has raised around £20,000 for Alfie’s Trust, and this year for the first time, they’re taking over a Pit Stop and giving the Mighty Striders and Big Strollers encouragement through the Pit Stop at Alfie’s home village of Peterculter.

Alfie’s Trust was established as registered charity in May 2012 by Alfie’s parents, Tracy and Mark, with a Sunday-name of The Alfie Milne Lymphangiomatosis Trust. It is the only UK-based patient organisation representing those with lymphangiomatosis (like Alfie) and Gorham Stout disease (a related condition). These are extremely rare, life-limiting and life-threatening conditions that are little understood and with limited treatment options. When Alfie was diagnosed in 2009, his family were offered very little support, information or hope for the future.

Alfie’s family knew that the best way to help their son and others affected by lymphangiomatosis and Gorham Stout Disease was to fund vital research and build a support network to offer patients and their families a chance to share experiences. Strength in numbers and hope for the future cannot be underestimated. Above all, Alfie’s Trust aims to prevent other families experiencing the void that Tracy and Mark encountered at Alfie’s diagnosis. Click here for more information on Alfie, his disease and the family’s involvement.

Since 2012, Alfie Trust has worked closely with organisations in Europe and the US to fund global patient and scientific conferences on the conditions, provide ongoing support for families, engage in dialogue with hospitals and care-givers on approaches to managing such rare diseases, and crucially, to further research into the cause and potential treatments for lymphangiomatosis and Gorham Stout Disease. The charity relies entirely on public donations to carry out this work, including UK-funded genetic research currently underway at Great Ormond Street Hospital.

Lymphangiomatosis and Gorham Stout Disease patients meet for the first time - Patient Conference, part-funded by Alfie’s Trust - Dallas, Texas, July 2014
Lymphangiomatosis and Gorham Stout Disease patients meet for the first time - Patient Conference, part-funded by Alfie’s Trust - Dallas, Texas, July 2014

Tracy Milne, Alfie’s Mum and Founder of Alfie’s Trust said: “With only 40 people in the UK and 200 worldwide known to have the disease, fundraising is challenging. The Kiltwalk is a fantastic platform for a small charity like Alfie’s Trust.

“This will be our fourth year at The Kiltwalk and we are delighted to be supporting the walkers at Peterculter this year. We have some fabulous entertainment lined up, and hope that everyone will take the opportunity to pause and listen, join in, and soak up the atmosphere while they collect their refreshments.

We have been elated by the much-needed funds raised at the Kiltwalk for Alfie’s Trust so far, and hope to continue to spread the word about lymphangiomatosis and the rare disease community – and the need for funds – with our presence at the event.

“The more people become aware of smaller charities like ours and what we are doing, the better they can they understand the reach and power of taking part in The Kiltwalk. The further support of The Hunter Foundation is the icing on the cake!”

Alfie’s Trust are always happy to welcome walkers to Team Alfie. For more information on how to join, contact ash@alfiemilne.org.uk.