Once again we have been successful in our application for matched research funding form the MRCG/HRB scheme this year. This grant is for a three year period. We now have three projects running under the scheme.

Last year the Patient Support group was represented by John Hannan, Josephine McGuirk and Orla Keane at two international Alpha-1 patient meetings. The first was the Third World Patient Congress in Rome in September 2007. The second was the Alfa Europe Annual meeting in Prague in May 2008. These were two very useful meetings in which patients from Europe and all over the world shared their experiences, views and plans. They proved to be a useful and enriching experience for all attendees and for the medical personnel. The Rome Congress was addressed by both Prof. Gerry McElvaney and Kitty O’Connor. This group also successfully raised funds through the Women’s Mini Marathon. We thank all who were involved.

As current President of Alfa Europe and CEO of this Foundation, I represented both organisations in various fora at home and the EU. Theses included: a council of Europe Transplant meeting in Dublin, a European Symposium on Rare Diseases in Dublin, a meeting of the EU Transplant Taskforce in Brussels, a meeting of Orphanet (Rare Diseases) in Paris. We also continued our active participation in: Medical Research Charities Group, Irish Donor Network, Irish Platform for Patient Organisations Science and Industry and EURORDIS. We hosted an information stand and presented at the Irish Thoracic Society (ITS) conference in November 2007 in Dublin and will do so also at this year’s ITS conference in Belfast 2008. We also attended at the American Thoracic Society Meeting in Toronto in May 2008, presenting some of our work which demonstrates a much higher incidence of Alpha-1 on the island of Ireland, with an estimated 3,000 individuals at risk of developing this severe disease. 

Our Registry continues to grow and improve and is now successfully capturing all the data necessary for patient welfare and research. We earnestly encourage more and more patients to sign up to the National Alpha-1 Patient Registry. This year in close cooperation with Ecom Ireland we have developed a new website which will keep you up to date with all the various developments in the world of Alpha-1. This brief overview may give you some idea of the work being done and the progress being made by the Alpha One Foundation. This work is collaborative and I wish to thank my team colleagues: Prof. Gerry McElvaney, Kitty O’Connor, Tomás Carroll and Olwen Floyd for their diligence and cooperation which made the past one such a success for the Foundation.

Larry Warren, CEO.