Houston Parents Speak Out About a Fatal Disease That Caused Their Otherwise Healthy Son To Go Blind and Their Race to Find a Cure Before the Disease Takes His Life

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Beyond Batten Disease Foundation Delivers the Largest Investment in the History of Batten Research to Texas Children’s Hospital

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“Children like Will Herndon and Christiane Benson are the inspiration for accelerating discoveries about this devastating disorder, and this next phase of research is a critical step in that process,” said Huda Zoghbi.

No treatment. No cure. Fatal. That’s what the parents of six-year old Will Herndon of The Woodlands were told when their son was diagnosed with a disorder that strikes young, otherwise healthy children. Will, now eleven, is blind and the family is heartbroken, but driven to find a cure. They are speaking for the first time to the Houston media about the disease that strikes children that formerly ran, laughed and sang.

“We are so blessed to live in a community that has passion to believe that even the impossible can become possible if you truly believe change can be made,” said Missy Herndon, Will’s mother and founder of The Will Herndon Research Fund at Beyond Batten Disease Foundation.

Batten Disease is a rare, inherited pediatric neurological disorder, which begins with vision loss and seizures, followed by cognitive and motor impairment. Currently, there is no cure and the disease is fatal in the late teens or early 20’s. This prognosis is unacceptable for Will Herndon’s family and the hundreds of children affected with this condition. Beyond Batten Disease Foundation (BBDF) supports research to treat and cure Batten disease that strikes young otherwise healthy children around the age of five.

Missy and Wayne Herndon, Will’s parents, jumped into action after receiving the devastating news about their son. They partnered with Beyond Batten Disease Foundation to raise funds from generous donors in The Woodlands, the Houston area and Texas. Ultimately, these contributions and others have resulted in the largest investment in the history of Batten Disease research in the United States to Texas Children’s Hospital.

“I am so grateful for the tremendous support we have received from the families of The Woodlands and beyond. Our success is a testimony to the resources; love and faith each of them have shared since day one of Will’s diagnosis. There is no doubt in my mind this community is committed and a life-changing discovery will happen,” said Missy Herndon.

Craig and Charlotte Benson of Austin created Beyond Batten Disease Foundation in 2008 after their daughter, Christiane, was diagnosed with Batten disease. In 2009, Wayne and Missy Herndon launched The Will Herndon Fund as part of the Foundation in honor of their son. The Fund’s mission is simple; SAVE WILL and the hundreds like him, and in the process create promising treatments for so many other neurodegenerative conditions.

Today, Mrs. Herndon presented a check from the Foundation to Texas Children’s Hospital for $1.75 million. The money will go to the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital. This follows another $2.5 million dollar check in 2009 from Jim and Cherie Flores and Beyond Batten Disease Foundation. The grants totaling $4.2 million dollars are the largest investment ever made in the history of Batten research. The money allowed a team of researchers from Italy to come to Texas Children’s to conduct research. The researchers have identified six potential drug compounds that are currently in testing. The $1.75 million from the Foundation will support the critical steps necessary to eventually translate basic research into future clinical trials, ultimately to treat children in a race against time for their lives.

“We are profoundly grateful that the Beyond Batten Disease Foundation has chosen to support Batten disease research at Texas Children’s,” said Dr. Huda Zoghbi, director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital. “Children like Will Herndon and Christiane Benson are the inspiration for accelerating discoveries about this devastating disorder, and this next phase of research is a critical step in that process.”

The Herndons host an annual event to raise money for the Beyond Batten Disease Foundation to help fund the research to find a cure. They will host the 6th Annual HOPE Under the Stars event at the The Woodlands Waterway Marriott Hotel and Convention Center in The Woodlands, Texas on Saturday, September 20, 2014. Doors open at 5:30 pm with a cocktail reception and silent auction. Missy and Wayne Herndon, Will’s parents, will kick-off the program at 7 pm with a research update while guests enjoy a southwestern inspired dinner. The celebration will honor the amazing support of The Woodlands community and announce the new grant at Texas Children’s Hospital featuring the most promising research in the history of the disease.

For more information, or for HOPE Under the Stars Tickets and Sponsorships, please visit: http://www.willherndon.org.

ABOUT BEYOND BATTEN DISEASE FOUNDATION
Beyond Batten Disease Foundation (BBDF) is the world’s largest organization dedicated to funding research for a treatment or cure for juvenile Batten disease. Batten disease is a rare, inherited pediatric neurological disorder, which begins with vision loss and seizures, followed by cognitive and motor impairment, and ultimately death by the late teens or 20s. Since its inception in 2008, BBDF has raised over $14.6 million for research through donations, co-funding, leveraging and partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in Batten Disease. For more information, visit http://www.beyondbatten.org.

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Mary Beth Kiser
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