On October 10th Tracy was invited to speak at The Glasgow Rare Disease Showcase. Sharing her son’s patient journey, from diagnosis to starting treatment, she will outline the challenges of navigating and understanding the healthcare system, how bad things had to become before her son’s condition was taken seriously, and how taking back control ledRead More
Danielle is one of our warrior mums. Coby, her son, has Gorham-Stout disease and Danielle took on the Yorkshire Three Peaks Challenge to raise funds for vital research. This challenge take in the 3 highest peaks in Yorkshire – Pen-y-ghent, Whernside, and Ingleborough. The aim of the challenge is to walk the 25-mile route in 12Read More
Alfie’s Trust is delighted to support the 2nd Lymphangiomatosis and Gorham’s Disease Alliance Patient and Family Conference in Dallas. Throughout the weekend there were opportunities for patients to meet face to face with other patients and their families, to hear presentations from clinicians and researchers on a wide range of topics, ask questions and toRead More
The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) were again selected to participate in the UPenn Orphan Disease Center (ODC) Million Dollar Bike Rid for research. The annual Upenn Medicine Orphan Disease Center’s Million Dollar Bike Ride was another incredible success this year in raising money for disease research. Along with aRead More
The Marchington Singers are a choir from mid-Staffordshire who contacted Alfie’s Trust at the beginning of July advising us that one of their members had nominated Alfie’s Trust to receive a donation from a concert that the choir organised. We want to thank the Marchington Singers and their friends and family that supported the event andRead More
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.