TSA Blog

  • #Fight4Treatment letter to Peter Lilley MP on Rare Disease Day 2016

    Dear Peter Lilley MP I would be grateful of you assistance in gaining approval for the drug Everolimus to be made available under the UK rare disease strategy. My son; Leo who is currently 12, was born with the genetic condition Tuberous Sclerosis, a condition that effects 1 in every 6000 live births. The condition has caused him to have Epilepsy, Autism and Learning difficulties due to growths in his brain, kidneys and other areas of his body. In 2014 he was placed on a.. ...more

  • #Fight4Treatment letter to Sajid Javid MP on Rare Disease Day 2016

    Dear Mr Javid, As today is "Rare Disease Day" I thought it would be opportune to write and ask for your support. Thirty eight years ago my daughter Georgina was diagnosed with Tuberous Sclerosis (TSC) at the age of 18 months. She was suffering from delayed development and epileptic seizures. As worried parents we were pleased to be given a diagnosis (which was quite an achievement in those days as we were to discover) but when I asked the consultant - what is the treatment - none and.. ...more

  • A Festive Thank You To You All!

    Christmas is almost upon us and we would like to say ‘thank you’ to everyone in the TSA community. First off, a huge thank you to everyone who has volunteered in every way for the TSA this year. Your help and commitment is invaluable, and we are looking forward to building on what we have accomplished so far to give even more help and support to the TSA Community in 2016 and beyond. Next up, massive thanks to everyone who has fund-raised or donated to the TSA this yea.. ...more

  • Eamonn McConville - Tri for Matthew

    This year is the 10th anniversary of our son Matthew who passed away on 11 August 2004 aged 12. In his short life he made such a huge impact on everyone that he met. He loved people and when you met him he made you feel so special. For all his difficulties Matthew lived life to the full and that was in no small way due to the love and care that he received from our wonderful family and friends. He has left a special bond between us all and that was so evident when we first mooted the i.. ...more