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Title
Double Down for Rett to Raise Awareness, Funds for Rett Syndrome Patients at Children’s of Alabama
Date
06/26/2019
Description

BIRMINGHAM – The Suki Foundation will present "Double Down for Rett" on Friday, Aug. 9, 6-10 p.m. at B&A Warehouse (1531 1st Ave. South, Birmingham 35233) to help fund research and therapy programs for Rett syndrome patients at Children's of Alabama.

The event will feature casino style entertainment, silent and live auctions, dinner and drinks. Individual tickets are $75 and $150 per couple.

The Suki Foundation was established in 2012 by Marie and Brian Bateh in honor of their daughter, Sarah Katherine (Suki), following Suki’s diagnosis of Rett syndrome (RS) at age 2. RS is a debilitating, genetic, neurological disorder that affects one in every 10,000 female births and occurs in all races and ethnicities. Development appears normal until a period of regression occurs between 6-18 months of age.

“Each child is different, but in Suki’s case, she never spoke, then lost the ability to use her hands, and now requires maximum assistance in every aspect of daily life including being fed through a feeding tube,” said Marie Bateh. “However, Suki has never lost her intellectual ability and comprehends everything. Essentially, she’s locked in a body that will not work for her.”

The Suki Foundation’s mission is to raise awareness about RS, support families through education and fund research to find a cure. To date, the foundation has raised more than $500,000, which was matched by both Children’s and the University of Alabama at Birmingham to create the Sarah Katherine Bateh Endowed Professorship at UAB. This professorship will help in the recruitment of a lead physician to serve in the Rett Syndrome Clinic and continue advancements in research.

The next goal for the Suki Foundation is to raise $250,000 to support a scholar position at UAB. This position will be named after one of the world’s leading Rett specialists, Alan Percy, M.D., pediatric neurologist. Dr. Percy, an internationally renowned Rett physician, treats patients at Children’s of Alabama and currently leads the Natural History Study at UAB. His clinic is the only Rett Syndrome Clinic in the Southeast and serves more than 400 girls and women affected by RS. Rett syndrome has been reversed in the mouse model and being able to reverse it in humans has been likened to the “Rosetta Stone” which could help unlock treatments and cures for other neurological disorders such as Alzheimer’s, Parkinson’s and autism.

For more information about Double Down for Rett and to purchase tickets, please visit www.sukifoundation.org or contact Mindy Wald at 638-9956 or mindy.wald@childrensal.org