Izzy Madry - Bloom Syndrome Conference 2020

In April 2019 Isabella (Izzy) was diagnosed with Bloom Syndrome after an 18 year wait for a diagnosis. Bloom Syndrome is an autosomal recessive disorder characterised by growth and immune deficiencies, skin sensitivity to sunlight, resistance to insulin and increased risk of multiple early onset cancers.  One of the first things people face with this diagnosis is that the median life span of people with Bloom Syndrome, is 27 years old.  We want to get Izzy to the Stepping Forward 2020 Bloom Syndrome Conference in Chicago (Rosemont), Illinois USA in August 2020. There, we will hear about recent research, meet Doctors and Patients together with families travelling the same path.  Izzy is currently on a SMOC (surveillance of multiple organ prone cancers) trial which gives her the surveillance she needs, we are very thankful for this. Will you join with us in supporting our precious girl as she “Steps forward” with this new diagnosis.