Danville Mom Works to Help Nonprofit Win $250,000 Research Grant from Pepsi

Paige Nues reluctantly left her marketing career with Oracle after her then 17-month-old daughter, Katie, was diagnosed in 2003 with Rett Syndrome, a debilitating neurological disorder.

Although it was a difficult decision for her and husband Jesse to make, Nues is passionate about the career path to which that decision eventually led. She is the director of family support for the International Rett Syndrome Foundation, based in Ohio.

Nues works from the Danville home she shares with her husband and Katie, 8, who goes to Montair Elementary, Melissa, 4, and Abby, 2, students at Fountainhead Montessori.

"In a way, I feel really fortunate that my life's work changed," said Nues. She began volunteering with the foundation in 2005 and started working full time in 2007. "It was the best thing that ever happened to me, because it got me out of a work life that wasn't totally satisfying."

Nues said 400 girls and women in California have been diagnosed with Rett Syndrome, a disorder found in approximately 1 in 10,00o females and rarely among males.

Children typically do not start showing signs of the disorder — repetitive hand motions, motor-control problems, irregular breathing, seizures and other symptoms — until age six months to 18 months. Katie was diagnosed at 17 months. There are no cures or treatment for Rett Syndrome.

During the family's search for medical support for Katie, in 2004, Nues helped found Katie's Clinic at the Chidren's Hospital and Research Center Oakland, which provides specialists for children with Rett Syndrome.

The clinic  has a three-month waiting list and just saw its 90th patient. Children come from the Western United States, Hawaii and even the Philippines to receive services. The clinic, which operates one afternoon a month, has experts from all over the country visit twice a year.

Nues has been working since June to help the International Rett Syndrome Foundation win a $250,000 Pepsi Refresh Project Grant that will go toward research.

The project with the most votes each month wins. 

The foundation was first in the competition in August until the last hours of voting. It is ranked first for September.

Winners are based on votes cast on the website, Facebook or by text message.

Voting ends at 9 p.m. Thursday, Sept. 30. Here's how to vote (note you may vote each of these ways once a day):

• On the Refresh Project website for the International Rett Syndrome Foundation.
• By texting 100842 to 73774
• Vote through Facebook.