The Flora Women’s Mini Marathon takes place on Monday 1st June 2009. This is a unique opportunity for Alphas and their families in alliance with the Patient Support Group and the Alpha One Foundation to raise funds for research and increased awareness into alpha-1 antitrypsin deficiency (Alpha-1).
This year we are raising funds for equipment used in our research laboratory. This vital piece of equipment costs €10,000. Sponsorship cards and T-shirts are available from the Alpha One Foundation at 01-8093871 or www.florawomensminimarathon.ie. Members of the Patient Support Group and Alpha One Foundation are participating in the event, meaning patients can raise funds by collecting money on behalf of these participants. We understand many patients may not be able to take part in this event themselves. For further details contact Kitty on 01-8093871 or log on to www.florawomensminimarathon.ie.
Alpha-1 can cause life threatening conditions in both adults and children. It is estimated that 3,000 people on the island of Ireland have Alpha-1 which is either undiagnosed or misdiagnosed as something else e.g. COPD or asthma. Our research demonstrates a much higher incidence of Alpha-1 on the island of Ireland than previously thought, with an estimated 3,000 individuals at risk of developing this severe disease. Alpha-1 individuals identified as a result of family screening have significantly increased lung function when compared to Alphas identified by targeted symptomatic screening. Our results emphasize the need for increased awareness and early detection of asymptomatic Alpha-1. Identification of patients from a targeted detection programme includes thorough family screening and this allows the initiation of preventative measures before significant lung disease has occurred.
Prof Gerry McElvaney, Prof of Medicine, RCSI and Beaumont Hospital states “our research and experience with Alpha-1 patients and other respiratory diseases, point to the fact that there is a great need for a National Respiratory Strategy to co-ordinate the proper diagnosis and treatment of Alpha-1 and other respiratory conditions. Our studies clearly show it is vital for the health and welfare of our patients that they are diagnosed as early as possible, before they develop symptoms.”
Alpha One Foundation supports the Irish Donor Network – Always carry a Donor Card.