The Saoirse Foundation is a registered non-profit charity which, when originally established in March 2010, by Tony and Mary Heffernan, was initially dedicated to just Battens Disease. It got its name from their daughter, Saoirse, who suffered from this ultra rare disease. In January 2011 this fatal disease claimed Saoirse’s life, then just 5 years of age.
While the charity continues to focus on Battens Disease, under its first initiativeBeeForBattens, since then we have evolved to encompass the support of many more sick children to meet the huge need of those affected by rare disease generally, which affect between 6-8% or the Irish population, that’s up-to 366,000 indivudals. As the various pressing needs of children with rare and genetic diseases were identified, The Saoirse Foundation established two more initiatives to help make positive life impacts for sick children. Hence, Liam’s Lodge and BUMBLEance were born.