Thank you for donations received

Alfie’s Trust has been very fortunate to receive two further donations. The first from Bucksburn & District Pipe Band who donated £300 from money that was raised through the 4th annual concert at the Music Hall. (I believe there has since been a 5th concert) The second is to Culter School for donating £400. ThanksRead More

Keep on Running

Alfie’s Trust would like to congratulate Beata Filipinyi who completed the Brighton Marathon in 4hrs 44 mins. Beata took on the challenge of the gruelling 26.2 miles to raise funds to help all those suffering from Lymphangiomatosis after her best friend’s son Bo, from the Netherlands, was diagnosed with this awful disease. Thank you toRead More

Help us raise funds for FREE when you shop online

Help us raise funds for FREE when you shop online is a brilliant way to raise money for Alfie’s Trust Shop online with over 2,700 retailers and they’ll give a donation every time you buy something, at no extra cost. 1. Start at Let’s say you want to buy a book from Amazon.Read More

Lymphangiomatosis Research at Great Ormond Street

GOSH has a Rare Dermatology Diseases Resource – An HTA tissue bank was set up in 2013 to help investigate very rare disorders where the cause is not known. Some genes for lymphatic conditions are known, however most are not yet known. Finding the root cause of Lymphangiomatosis would be very important step forward inRead More

Keep on Running – Brighton Marathon Here We Come.

Beata has been training hard over the last year to complete her first ever Marathon. On the 12th of April, Beata will take on the challenge of the Brighton Marathon raising funds for Alfie’s Trust. About a year ago her best friend’s son Bo from the Netherlands, aged 20 months old at the time, wasRead More

The Centre for Research into Rare Disease in Children

The Centre for research into Rare Disease in Children will be the world’s first centre dedicated to paediatric research into rare diseases. It is a partnership between Great Ormond Street Hospital, University College London and Great Ormond Street Hospital’s Children’s Charity. The building will sit adjacent to the hospital and UCL Institute of Child Health.Read More

Rare Disease Day 2015 – Did you know?

The 28th of February marks Rare Disease Day 2015, which aims to increase awareness of diseases like Alfie’s. Did you know: • 1 in 17 people will be affected by a rare disease at some point in their life. This amounts to approximately 3.5 million people in the UK. • 75% of rare diseases affectRead More

Alfie Update

Alfie continues to do well on his current treatment regime and we are working hard to maintain his mobility which has deteriorated over the last year. Alfie’s regular review at Great Ormond Street Hospital saw us in London in December. As well as being kept busy meeting with all the disciplines that are involved inRead More

Thank you to Jo Golder, Peterculter Golf Club & Dizzy’s

We have three people/groups to thank for their kind donations: Thank you to Jo Golder for putting our charity name forward to receive a donation of £1,000 through her work at Nexen Petroleum Ltd. The Ladies Section at Peterculter Golf Club kindly donated £100. Thank you ladies. Alfie’s Trust was nominated to receive the proceedsRead More

Team Alfie joins Aberdeen and Deeside Kiltwalk

  Alfie’s Trust is excited to be entering a team for the Aberdeen and Deeside Kiltwalk in June 2015. There are two walks to choose from, an 8-mile route or a 26-mile marathon. Both are along the Deeside Way and end with a celebration at Potarch. 26-milers start at the Duthie Park, 8-mile walkers startRead More

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Alfie Milne Lymphangiomatosis Trust is a registered charity in Scotland (SC043165)