Tarynn Heasley from the UK is the mother of Saffron a young girl affected by lymphangiomatosis. This year Tarynn decided to run 2 marathons and 2 ultra-marathons in 4 months to raise money for the Alfie Milne Lymphangiomatosis Trust. At the time of writing this article, Tarynn has completed 3 out of the 4 events. Read More
With thoughts turning towards summer holidays, the Kiltwalk may feel like a distant memory, but the money from our supporters is still coming in. Thank you to our walkers and to all of their supporters – the current total stands at just over £2,600, so with the added 40% bonus from The Hunter Foundation,Read More
May 26, is World #LGDAwareness Day! All through this week, we shared insights from the doctors and researchers working to find better treatments and a cure for our Warriors! We also asked our patient community to share their thoughts with us on what it is like to be ‘rare’ – we had some powerful responses.
Mark Porter with Alfie Milne Three weeks ago Mark Porter ran the Manchester marathon in aid of Alfie’s Trust. Mark had four aims; 1. To finish the 26 miles 2. To NOT walk 3. To finish under 4 hours 4. To raise £1,000 We are pleased to say he managed all four of hisRead More
We want to say a big thank you to the Acclamations Choir for their continued support and for choosing Alfie’s Trust as their nominated charity this year. The Choir sang their hearts out all year and raised an amazing £1,500.
‘In 2018 the theme was Research. Research is key. It brings hope to the millions of people living with rare diseases across the world and their families’. We are celebrating Rare Disease Day. Working together with Rebecca Stewart from Rare Revolution Magazine we have managed to get some great articles, including our own, in theRead More
It’s all a bit of a blur. Great night at the Alfie’s Trust ceilidh at Culter Village Hall. Music provided by the brilliant Ragin’ Ceilidh Band, and fab organisation by Stewart Gardiner. Thanks to everyone that came and supported the event. Lots of dancing, drinking, eating and a fantastic amount of money raised. A grand total ofRead More
Come along for a night of fun all in aid of Alfie’s Trust. On the 25th of November at the Peterculter Village Hall, the Ragin’ Ceilidh Band will have you up on your feet dancing the night away. When you’re not dancing there will be time to chat, drink and eat. There is alsoRead More
Interested in ‘Rare’? Then subscribe to this fantastic magazine ‘Rare Revolution’. A great educational and inspirational read for anyone involved in the rare disease community. Please take a moment to check it out. ‘Rare Science’ Alfie’s Trust is excited to be featured in the ‘Rare Science’ section (page 58-61) of this issue. Along with ourRead More
Come and join us on the 2nd of September for our Annual Golf Event on the 9 hole course at the Paul Lawrie Golf Centre in Aberdeen. You will need four players, children are welcome, to take part in our Texas Scramble. T-off times available throughout the morning. Contact us to secure your place.