We ask your attention for Batten disease.
A child with Batten disease, child dementia, seems healthy until he or she reaches the age of five.
A child with Batten starts to lose his or her eyesight around the beginning of primary school. The disease progresses quickly and mostly leads to blindness within two years. The loss of cognitive abilities starts shortly afterwards. Daily activities such as calculating as well as speaking become increasingly more difficult. It becomes more and more problematic for the people around them with understanding of what the child wants to say, which often causes the child to feel lonely and misunderstood. In addition, children with Batten disease often suffer from epilepsy and heart diseases. They are bound to a wheelchair early on because walking is not possible anymore. At the final stage of the disease, it is impossible to get out of bed anymore. Eventually death releases them from their suffering and pain. Children with the Batten disease generally reach the age between twenty and thirty years old.
Children with Batten, child dementia, are born with a disease that receives little attention from the pharmaceutic industry. We are young, thankfully healthy, and we have the possibility to help finance the research for this deadly disease.
The purpose of our 2kayak4batten action is to help speed up the development of new therapies for Batten childhood dementia. The aim of such therapies is retaining normal brain function and prevent, slow down or delay the onset of cognitive decline, epilepsy and cardiac complications. This is how we want to increase the chance to help these patients. The researchers we sponsor (Dr. Katja Rietdorf at Milton Keynes, Dr. Emyr Lloyd-Evans at Cardiff and Dr. Christian Grimm at Munich) use human Batten nerve and heart cells to better understand the disease mechanism in brain and heart, and to identify therapeutics that can compensate for the loss of the Batten gene.