03/08/2025
UPDATE GIVINOSTAT
PLEASE SIGN AND SHARE
https://www.change.org/TimeIsMuscleIreland
As you all know we are trying to get a treatment called Givinostat approved in Ireland which has recently been approved in Europe for Duchenne. It is not a cure but slows down the progression by stopping the inflammation in the muscles. While things have started off very positive for the Duchenne Community this week as in the Application from the Pharmaceutical Company has been accepted and gone for Rapid Review which will take up to 30 days. It then will move to Health Technology Assessment (HTA) for some time. We want this process to go through as quickly as possible and need your help.TIME IS MUSCLE and unfortunately Aaron and all our boys cant wait months. If you could sign and share this petition to help try and get this treatment for all our boys as soon as possible we would be so grateful.
Lastly we just want to thank everyone so much for all your support since Duchenne changed our lives forever. The love and kindness and support in the community has been unbelievable and we are so ever grateful for each and every one of you ❤
TIME IS MUSCLE - Keep Our Boys Stronger for Longer
