Working to find a cure Rett syndrome

Genetic mutation causes the condition has been reversed in mice

A Red Deer family continues to work towards a cure for Rett syndrome.

Nicole Hollman said the money her family raises locally in October and November could help cure her daughter Falan, 8.

She said the genetic mutation that causes the condition has been discovered and reversed in mice.

“If they can reverse it in humans, my daughter’s condition would be fully reversed. It’s been stated by some of the best researchers in the world that Rett syndrome can be cured. They just need the dollars to do it,” said Hollman on Friday.

“It’s gaining attention because a lot of other conditions rely on the reversal of Rett syndrome, multiple sclerosis and Parkinson’s just to name a few. But it has to be done in Rett syndrome first.”

Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments to their ability to speak, walk, eat and even breathe.

Falan, a Grade 2 student at Mattie McCullough School, is nonverbal, requires a wheelchair and has uncontrolled movements.

Hollman said Canada doesn’t have any clinical trials going on right now.

“There is only one fund in Canada to help this happen and that’s The Hope Fund. We need to raise money.”

On Tuesday, a hair dying event at Studio D Salon & Spa, at 3-1350 Robinson Ave. in Penhold, will feature raffles, refreshments, purple hair dye streaks for $15 a streak and purple hair pieces for $20 each. The event runs from 5 to 8 p.m.

The 3rd annual Rise Against Rett Syndrome on Nov. 26 starts at 6 p.m. at Bo’s Bar and Grill. Contact seanhollman@yahoo.com or call 403-598-2000.

In addition to raising money for research, each year Falan chooses a local charity to receive some of the money raised locally and this year it’s the service dog organization Dogs with Wings, of Edmonton.

For more information go to Rise Against Rett Syndrome on Facebook.

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