CHARLOTTE, N.C. — October is Rett Syndrome Awareness Month.
What You Need To Know
- October is Rett Syndrome Awareness Month
- Rett Syndrome is a rare genetic disorder
- In Charlotte, the Ella Foard Foundation is raising awareness and money
The International Rett Syndrome Foundation says it is a rare genetic neurological disorder that can impact the ability to speak, walk, eat and breathe easily.
A Charlotte girl, Ella Foard, was diagnosed with Rett syndrome in 2008.
Her father, John Foard, says not many people know about this disorder.
"It’s such a rare disorder, I had never heard of it and our pediatrician at the time had never heard of it either,” he said.
The Foard family established the Ella Foard Foundation to educate people about the disease and raise money.
So far, Foard says their foundation has raised more than $600,000.
"That’s our hope as well is to not just drive awareness, but to drive research dollars,” he said. “So the more research we can do, the closer we’ll get to hopefully one day finding a cure.”
The Chair of the Board of Directors for the International Rett Syndrome Foundation, Bill Babiarz, says he had a similar story to the Foards.
He had not heard of the disorder either until his daughter was diagnosed.
“The doctor who diagnosed her after you know, the tenth doctor we went to that finally diagnosed her was reading off of a Google sheet,” he said. “So it was the doctor's introduction as well.”
He says the biggest challenge is making people aware it exists, but also says it has come a long way.
“I’ve been involved with Rett syndrome for 12 or 13 years and there was nothing basically 12 years ago,” he said. “And now there is about probably 50 researchers worldwide dedicating their research to Rett syndrome, and there are 20 pharmaceutical companies who are focused on Rett syndrome.”
Babiarz says it was recently announced that the FDA accepted for filing a new drug application for a treatment for Rett syndrome.
He says if approved, it will be the first prescribable treatment available.
You can follow Ella’s journey on Facebook. You can also follow the International Rett Syndrome Foundation and the Ella Foard Foundation for more updates.