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Hope Under the Stars Gala a Great Success

(L-R): Nicole Murphy, Dr. Jeffery Shilt, Will Herndon, Michelle Riley-Brown, Dr. Charles Hankins, Missy Herndon

(L-R): Nicole Murphy, Dr. Jeffery Shilt, Will Herndon, Michelle Riley-Brown, Dr. Charles Hankins, Missy Herndon

Texas Children’s Hospital Donated $25,000 To Gala Benefitting The Will Herndon Research Fund

The Eighth Annual HOPE Under the Stars Gala was a great success, thanks to its 2016 Presenting Sponsor, Texas Children’s Hospital. With a gift of $25,000, the hospital commited much-needed financial support to continue the Will Herndon Research Fund’s efforts to receive FDA approval for a potential treatment that slows the progression of juvenile Batten disease.

The Gala was held Saturday, Sept. 10 at The Woodlands Waterway Marriott Hotel and Convention Center. Approximately 1,000 guests attended the event, which featured live and silent auctions, personalized portraits from The Original Butt Sketch Artists, a diamond raffle, a Kendra Scott jewelry pull, live music from acoustic guitarist Jon McConnell, and an after party headlined by entertainer DJ Lucy Wrubel.

The Herndon family spoke as dinner was served, sharing an update on the status of the clinical trial. Guests received a glimpse into the daily life of Will Herndon, and had the opportunity to meet his tremendous support team, who are dedicated to keeping him strong as he continues to fight against the disease.

The Will Herndon Research Fund at Beyond Batten Disease Foundation (HOPE) was established in 2009 to raise funds for research into finding a cure for juvenile Batten disease. This effort began in honor of Will, who was diagnosed at the age of 6. This rare, fatal, genetic disease attacks an otherwise healthy child beginning with vision loss, declined cognitive skills and seizures. The symptoms are similar to a combination of blindness, Alzheimer’s and Parkinson’s diseases. With no current treatment or cure, Batten disease is always fatal, often by the late teens or early 20s.

“After seven years of diligent studies, our team of researchers at the Neurological Research Institute at Texas Children’s Hospital has presented the Batten community with a medical breakthrough – a treatment that slows the progression of the disease!” said Missy Herndon, Will’s mother and HOPE founder. “At this very moment, it is undergoing FDA-required validation studies, with a goal of being accepted into a clinical trial. This is the HOPE we have been praying for since 2009.”

The Foundation’s goal is to save Will and the hundreds of other children who have juvenile Batten disease. To help, call 409-454-9330 or visit willherndon.org .

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