Tuesday, October 21, 2008


Hello all.
As you all know my life is spent advocating and caring for my daughter with Rett Syndrome. A terrible Neurodevelopmental disorder that only affects girls. October is Rett Syndrome Awareness Month and I have been fundraising like crazy. I just checked to see what her total was and it is a whopping 0.00
Seriously, in all my efforts not one person has donated one dollar towards treatment for Abby and our girls. I do want you to know that money donated goes to labs, doctors, medicines and research not our pockets.
You can donate in honor of Abby at www.girlpower2cure.org/abby
You can make a one time or recurring donation. All donations are tax deductible!
I have included a few interesting pieces of info for you.

WASHINGTON (Reuters) - Scientists searching for a way to treat the rare but severe childhood neurological disorder Rett syndrome have reversed the disease in mice, raising hopes for doing the same in people.
In a study appearing on Thursday in the journal Science, researchers led by Adrian Bird of the University of Edinburgh in Scotland switched on a gene called MECP2 in mice with the equivalent of Rett syndrome to make their symptoms vanish.
The surprising results contradicted the notion that damage to the brain caused by the disease, which occurs nearly exclusively in girls, is permanent.
"It rocked us back on our heels because in a way we were expecting a more disappointing result," Bird said in an interview.
About one in every 10,000 to 15,000 girls born have Rett syndrome, which affects all racial and ethnic groups worldwide, according to the U.S. National Institutes of Health.
In their first six to 18 months of life, the children develop apparently normally before the onset of devastating symptoms. Children with Rett syndrome commonly show autistic-like behaviors in the early stages.
It destroys speech, normal movement and functional hand use, and causes breathing difficulties, susceptibility to epileptic fits and tremors like those in Parkinson's disease. Many patients are confined to wheelchairs. Those who can walk do so with an abnormal, stiff-legged gait.
A few Rett Syndrome facts:Debilitating neurological disorder that predominantly affects females.
The most severe form of autism.
The leading cause of severe impairment in girls - most cannot speak, walk or use their hands.
As prevalent as Cystic Fibrosis, ALS and Huntington's.
Another little girl is born with Rett Syndrome every 90 minutes .

1 comment:

Brooklyn said...

Keep up the great work Terri - we appreciate everything you are doing for Abby and all of our girls!