After some months of tests we received the worst possible news that we have had in our lives.Hodei was diagnosed Batten CLN6, a neurodegenerative disease of rapid & terrible evolution, which currently has no cure. On this day, the sky came crashing down on our heads, & we entered into a deep, dark place. Not only for Hodei who had this terrible condition, but that there was a 25% chance that his little sister would have the same disease.
We need your help to fight this terrible disease in order to move forward on the path to a cure for affected children. We want a future for them.
Help us so we can help families living with Batten disease.
Help us make Batten disease visible. If we don’t see it, it seems that it doesn’t exist, and what doesn’t exist, is not investigated.
We want a future.
We want research.
We want quality of life.
Together, with your help, we will be closer to achieving it.
Any contribution, no matter how small, can make a difference. There are multiple ways you can help in the fight against Batten CLN6 disease.
- Make a direct donation by deposit, bank transfer or bizum.
- Buy or distribute any of our solidarity merchandising products.
- Spread our message on your social networks, job and so on.
- Collaborate taking part in the different tasks of the association.