THE WOODLANDS, TX — Nearly 700 people are expected to attend one of the Houston area’s most important fundraisers on September 15, the 4th annual HOPE Under the Stars Gala benefiting the Will Herndon Fund for Juvenile Batten Disease Research (WHF).
The evening event at The Woodlands Resort and Conference Center will generate critically needed funds for research to develop a treatment and cure for juvenile Batten disease, a rare, fatal, neurodegenerative disorder that affects children.
Attendees of the “Texas chic”-themed party will enjoy a night of great entertainment including mechanical bull riding, professional artist sketches, dancing and live music by The Buck Town All-Stars, the nine-piece, New Orleans-based band famous for its energizing mix of rock, soul, funk, R&B and Crescent City classics. Additionally, there will be a photo booth, casino tables, a raffle, and both live and silent auctions for fabulous items. Tickets and sponsorship opportunities are still available through the WHF website or by calling 409.454.9330.
Juvenile Batten disease is a rare but devastating illness that typically appears between the ages of five and 10. Early symptoms include vision loss leading to total blindness and also seizures. As the disease progresses, it diminishes cognitive and motor capacities – to the point where affected youngsters require 24-hour care – and ultimately causes death during the late teen years or early 20s.
Because juvenile Batten disease is uncommon – it occurs in two to four of every 100,000 children born in the United States – there is very little government funding for research to find a treatment and cure. So in August 2009, after learning that their then six-year-old son, Will, had Batten disease, Missy and Wayne Herndon of The Woodlands started the Will Herndon Fund. WHF is a directed fund of Beyond Batten Disease Foundation, launched a year earlier to raise awareness of and support research to eradicate the malady. The foundation also has been leading development of a test to detect the gene mutations that cause Batten disease as well as 600-plus other serious, often fatal, childhood conditions.
“As we approach this year’s gala, which is drawing a record number of attendees, we are more heartened than ever by the ongoing support of our friends and neighbors in the Greater Woodlands community,” said Missy Herndon. “Every dollar we raise advances the foundation’s life-saving work and gives new hope to families affected by Batten disease.”
In recent years, WHF has helped fund many of the world’s most promising research initiatives focused on juvenile Batten disease. This includes funding a team of researchers at the Jan and Dan Duncan Neurological Research Institute at Houston’s renowned Texas Children’s Hospital. The team has identified a drug combination that may improve brain function in children with Batten disease and currently is analyzing disease models to study long-term effects on progression of the illness. This includes funding a team of researchers at Houston’s renowned Texas Children’s Hospital which has identified a drug combination that may improve brain function in children with Batten disease. Currently, the team is analyzing disease models to study the long-term effects of this drug on the progression of the disease. Additionally, with funds raised from last year’s HOPE Under the Stars gala, WHF recently brought in regulatory consultants to partner with the researchers in developing a path to FDA approval for a human clinical trial of the drug.
Other WHF-funded projects include a partnership with the American Brain Foundation to create the first clinical research fellowship in juvenile Batten disease; research support at Italy’s Telethon Institute of Genetics and Medicine using robotic technology to screen hundreds of drugs for their potential to treat Batten disease; and additional research at London’s King’s College and the University of Iowa to learn more about Batten disease cell function. Each of these projects is part of WHF’s strategic plan to accelerate research for developing treatments and a cure for juvenile Batten disease.
About The Will Herndon Fund and Beyond Batten Disease Foundation
The Will Herndon Fund is a directed fund of the Beyond Batten Disease Foundation which works to cure and prevent Batten disease, a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures, then cognitive and motor impairment, and ultimately death during the late teen years or early 20s. The foundation raises funds for research and is leading development of an easy and inexpensive, groundbreaking blood test to detect the gene mutations that cause Batten disease as well as over 600 other rare but serious and often fatal childhood ailments. For more information, visit www.beyondbatten.org.
Photos: Above–Will Herndon, age 9, was diagnosed with juvenile Batten disease in 2009; Below–The Will Herndon Fund supports important juvenile Batten disease research at the Jan and Dan Duncan Neurological Research Institute at Houston’s renowned Texas Children’s Hospital.