I want to tell you about an amazing milestone! We recently added our 100th Rett Girl to our website! Who is this special girl? Her name is Oaklynn.
And before I could take a breath and let it sink in, we got #101, 102, 103, and 104!
I remember when we had just 6 girls listed.
I am so excited about the strength of this community of girls and their families helping to spread awareness about Rett Syndrome through their personal stories.
We used to manage these pages manually -- editing text and updating photos for everyone. Now, we have user-accessible accounts so the families can keep their pages up to date at any time.
While 100+ is AMAZING - I am humbled to think that for each ONE of them, there are another 5,000 suffering out there.
I want to find each and every girl -- and reach out to their family. I lose sleep at night thinking about the girls who are still living without the proper diagnosis ... and the ones whose doctors/caregivers are not linked into the Rett community.
How will they know when we have treatments?
Awareness is about building strength in the Rett community: for support, for funding and for awareness... a key part of which has to be to find all of these girls so we can help them when the times comes -- and keep them strong while they wait.
Thank you to all of the families who have engaged with GP2C and lend us your strength on a daily basis!
Founder and Executive Director
Girl Power 2 Cure