
This is actually Casey and Sam with my parents and the puppy at Thanksgiving.
What I mean by This IS you guys is this:
Carrie told me about a story on King 5 about Fragile X. The kiddo in the story participated in the same minocycline trial at UCDavis as Casey did. Guess who funded the studies that found the minocycline/Fragile X relationship. Yup. FRAXA.
Guess where every RCF's Strongest Man and Woman dollar goes? yup. FRAXA.
I can't stress this enough. THIS IS YOUR DONATION AT WORK. You guys did this. Your dollars did this. It's an amazing display of what a community can do when we come together for a common cause. Your donation doesn't go to some vaccuum, never to be seen or heard from again. It's working- for Casey and lots of kids like him, including this little girl.
You guys kick ass.
Drug studied for Fragile X, autism symptoms
by HealthLink Team
KING5.com
Posted on January 3, 2012 at 6:00 AM
Holly is her mom's little princess. But her fairytale started with a scare. Her mother, Vicki Davis, learned while pregnant with Holly, that she was a carrier of Fragile X Syndrome.
"I had never heard of it. I had no clue what it was," said Vicki Davis.
It's a mutation of a gene on the x chromosome, that leads to a lack of protein production, critical for development. It's one of the most common causes of mental retardation and autism.
"Thirty percent of individuals with Fragile X Syndrome have full autism. Another thirty percent have autism spectrum disorder," explained Dr. Randi Hagerman. Dr. Hagerman is Medical Director of the MIND Institute and Professor of Pediatrics, at University of California Davis Medical Center.
Dr. Hagerman met holly when the girl was just months old. Her Fragile X Syndrome was subtle. Still there were issues.
"She was extremely delayed," said Dr. Hagerman
As part of a clinical trial, Holly started taking a serotonin medication. Then minocycline, a common antibiotic normally used to treat acne, was added to her regimen.
"Her developmental testing just improved remarkably," said Dr. Hagerman.
Holly didn't start talking until she was two and a half. Vicki Davis says additional minocycline treatments around that time helped her catch up, even excel. At just four, Holly started reading.
"The medication really created some of those pathways that taught her how to learn," said Davis.
The drugs that treated Holly have some side effects. They include gastro-intestinal issues, and in rare cases, severe headaches.
Dr. Hagerman hopes the treatments that helped Holly could do the same for autistic kids. That could mean a lot more children living happily ever after.
Dr. Hagerman Said the treatment can be used in older kids with Fragile X Syndrome. But the results might not be as dramatic. The researchers are currently testing other drugs to improve symptoms for 5 to 25 year olds.