By Bob Gunner in The Paper
Published September 4, 2014
THE WOODLANDS, TX (September 4, 2014) – No treatment. No cure, fatal. These words began the movement of HOPE back in August of 2009 to save then 6 year old resident of The Woodlands, Will Herndon. His diagnosis of the rare, genetic, neuro-degenerative condition called juvenile Batten disease launched a grass roots effort that has since raised $2.5 million locally to fund the most promising research in the history of the disease. This success and progress will be celebrated at the annual Texas chic–themed gala, HOPE Under the Stars on Saturday, September 20, 2014 at The Woodlands Waterway Marriott & Convention Center.
Juvenile Batten disease is a condition that affects an otherwise healthy child with blindness, seizures and memory loss. Overtime, children lose their cognitive functions and mobility, leaving them suffering with dementia and wheelchair-bound, then bedridden. Children that formerly ran, laughed and sang, progressively lose everything. Currently fatal in the late teens or early 20’s, this prognosis is unacceptable for Will Herndon and the hundreds of children affected with this condition.
“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. “I am so grateful for the tremendous support we have received from the families of The Woodlands. 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.”
The Will Herndon Research Fund joined forces with Beyond Batten Disease Foundation in 2009 with a shared mission: to find a treatment for juvenile Batten disease. Later that same year, the foundation funded a team of Italian researchers to focus on the disease at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital. The foundation also funded the largest grant ever designated for juvenile Batten disease research; $2.5 million. Since that time, the foundation has raised over $13.2 million for Batten research through direct donations, co-funding and sponsorships. Currently, these researchers have identified six drug compounds and are finalizing research plans to move those into clinical studies.
HOPE Under the Stars began as a local, grassroots event for The Will Herndon Research Fund for Juvenile Batten Disease at Beyond Batten Disease Foundation in the Rob Fleming Park five years ago with a mission of HOPE to help fund a treatment or cure for this devastating and fatal condition affecting Will Herndon, of The Woodlands. This year, expecting a crowd of more than 800 guests, the 6th Annual HOPE Under the Stars event will be held at the largest indoor venue in our area, to accommodate a growing crowd of continued and new supporters. The Texas chic event will be at 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 celebrate the amazing support of The Woodlands community raising more than $2.5 million dollars since The Fund’s inception, 5 years ago. A live auction will follow the presentation and much loved New Orleans brass band, The Bucktown All-Stars, will entertain the crowd. Throughout the evening, guests will have the opportunity to ride a mechanical bull, capture the moment with a “Selfie” mirror and pose for a souvenir “butt sketch”. A special “HOPE Lounge” created especially for sports fans, will feature a cigar bar, casino tables and showcase the evening’s SEC Football game. Adjacent to the dance floor will be a “HOPE Hideaway” where guests can take a moment away from the excitement to catch up with friends, new and old. For more information, or for HOPE Under the Stars Tickets and Sponsorships, please visit: www.willherndon.org.
The Will Herndon Research Fund at Beyond Batten Disease Foundation is based in The Woodlands, TX and has multiple fundraising and awareness events locally throughout the year.
To read article on The Paper, click here.