LA NOUVELLE COLLECTE 2022 est ici https://www.alvarum.com/dennislienard ******************************************************************* OUR STORY On 19 January 2021, my eldest daughter, 11-year-old Adeline, was diagnosed with a rare genetic degenerative disorder called SMA PME . Only a few children have been diagnosed with this rare illness in France and the world. It causes muscle weakness and brain disorders and doctors have given Adeline 4 years to live. Adeline already suffers from major symptoms such as epileptic fits, muscle weakness, tremors and hearing loss. There is currently no treatment for the illness , but there is one hope: genetic therapy , which has already cured similar illnesses. I am therefore involved in a race against time with the association “ ASAP for Children ”, who supports medical research into the mutation of ASAH1, the gene responsible for SMA PME and Farber disease, two degenerative brain disorders, which currently lead to the premature death of young patients due to lack of treatment. Thanks to a fund-raiser in 2020, researchers are already working on a genetic therapy treatment for this illness. The 2021 fund-raiser aims to finance the finalisation of a treatment for SMA PME (which will cost between €1,5M to €2M) with an objective to find a cure in 2022/2023. Today, we need your help to support research by contributing to collect funds. Thank you in advance for your support which will help prolong the life of Adeline and the other children suffering from this illness.