The non-profit organisation ‘Emily’s future is now’ is named after the girl Emily.
She is a very open-hearted and cheerful child with a sunny disposition who has suffered from the severe,
rare form of merosin deficiency muscular dystrophy,
also known as LAMA2, since her birth on 28 December 2018 and is still unable to walk.
At the age of 4, after Emily had to take cough syrup again, she asked:
‘Daddy, and when will I get the medicine so I can finally walk?’
This event triggered the final starting signal for the project of a non-profit association in favour of research into this disease,
not only for Emily but for all LAMA2 sick children around the world.
Are you personally affected too or do you know families in a similar situation?
You are not alone!
Together we can support each other, share valuable information, and create new perspectives. Stronger together!