On April 18, 2022 our precious Ryan Elizabeth Joy Shaw was diagnosed with Batten's Disease (subtype CLN5). Her parents were told the news by a geneticist who had searched her genome twice before he found her defective gene. He told them that there was no cure, that she had a very shortened life expectancy and that the only thing they could do for her was to offer "comfort and care". Their world, her sister's world and our world as grandparents and aunts and uncles who loved her dearly was turned upside down. But, her parents refused to accept the fact that there was no help for her and through the Batten's Organization found a research trial that was being conducted for CLN5 children at the University of Rochester in New York. She is presently part of a trial and hopefully someday in the future Ryan and every other child in the world who has been or will be diagnosed with this terrible disease will benefit in some way as trials and research continues to push forward with the help of donors and the amazing work of the Batten's Disease and Family Support Groups around the world.  Thank you!! The team of Rally For Ryan