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Strollathon For Rett Syndrome
CINCINNATI: (Liz Bonis) Hundreds are strolling down the Ohio River this September weekend 2013, to celebrate progress, and raise money for research to fight a rare syndrome which impacts young girls.
Medical Reporter Liz Bonis tells us about it in today's Medical Edge. Each year at Strollathons across the country, such as this one, hundreds of families get together to support the International Rett Syndrome Foundation. The syndrome is a collection of symptoms which cause a regression of skills in young girls.
Dr. Shannon Standridge, Cincinnati Children's Hospital:
"Particularly, they lose their speech, they lose their motor skills, and their hand skills and they do not regain these skills throughout their life."
Jody Rodriguez's recalls when this happened to her daughter Gabby, who is now six years old
"She used to be able to say a few words, and then lost all of her language and that was the big red flag for us."
Lisa Byrne says every Strollathon is to let these families know, they don't fly those flags alone.
"It's wonderful because we are raising awareness, we're raising funds, and we're also just interacting with each other."
The exciting thing about all this is that they are making progress in this disease, already in laboratory studies they have shown that maybe you can halt its progress and maybe even reverse what's happening in the brain.
Doctor Shannon Standridge is a pediatric neurologist.
She says this is all possible because it appears that some of Gabby's symptoms are due to changes in the neurons in the brain, but researchers have recently learned ...
"That this change in the neurons, which are the nerve cells of the brain that are affected can be stopped and several of these developmental disabilities can be regained and improved."
So, rather than Gabby continuing to lose her skills...
"We have clinical trials going on now to look at how we can help arrest this developmental regression, and actually get those skills back."
So for Jody, and Gabby's family, that means one thing.
"We know inside she has a lot to say, we just want to find a cure, so one day she can talk to us."
Bet she'll simply say "thanks to those whose strolling made it all happen."
You're invited to attend the Strollathon on Saturday at 11am at Sawyer Point.