Why families must activate
Reversing Rett Syndrome requires collaboration and effort from all of us who love someone with the condition.
As parents of daughters with Rett Syndrome, we all know why treatment is so vital and why it is so vital now. But how many of us reallize that the ultimate power to speed Rett research is in our hands? How many of us are taking an active role in ensuring that treatment is delivered sooner, rather than later?
Living with daughters with Rett Syndrome means that most of us have plenty to be getting on with. We are busy about our lives, caring for our daughters and our other children, going to work, holding down relationships. Trying to get on with life, under fairly pressing circumstances.
Many of us hope for a cure but when people ask us if there is any treatment for our daughters, most of us will answer:
'They '(researchers/scientists/organizations/someone/anyone)' are working on it.'
We assume that from these basic scientific advances which are being made in the lab, a drug will soon materialize and transform our daughters' lives.
This may not be the reality. Current estimates of the time it takes to translate laboratory findings into tangible treatment stand at between 10-20 years.
For many of us living with a daughter with Rett Syndrome today, that is too long to wait.
Whoever you are, whatever your background, whatever or whoever is your reason for being here, there is something you can do to further this effort to drive the science forward.
When life gives you lemons, make lemonade. Sell it on a little stand outside your house. Have a party. Dance the night away for that person you love or run a marathon. Just do something.
We'll do our part, too. We'll make sure that the funds you raise reach the scientists and researchers working every day to find treatment.
Reversing Rett Syndrome requires new accountability and a sharp focus.
Join us. Help us change our children's future.