Nov. 12 HOPE Under the Stars Gala In The Woodlands Raises Funds to Fight Juvenile Batten Disease

Share Article

The Will Herndon Fund for Juvenile Batten Disease Research is preparing to host one of the Houston area’s most important fundraisers of the year, the 3rd annual HOPE Under the Stars Gala on Nov. 12 in The Woodlands. The event will raise funds for research to develop treatment and a cure for juvenile Batten disease, a rare but devastating, genetically transmitted and fatal neurodegenerative disorder affecting children.

The gala will raise funds for Batten disease research to help children like Will Herndon.

Our heartfelt thanks go out to those who are helping us raise critically-needed funds for research to treat and cure juvenile Batten disease.

Tickets are still available for one of the Houston area’s most important fundraisers of the year, the 3rd annual HOPE Under the Stars Gala benefiting The Will Herndon Fund for Juvenile Batten Disease Research.

The Nov. 12 evening event at The Woodlands Resort and Conference Center will raise funds for research to develop treatment and a cure for juvenile Batten disease, a rare but devastating, genetically transmitted and fatal neurodegenerative disorder affecting children.

Gala planners expect more than 600 guests for a “Texas chic”-themed party that will include mechanical bull riding, “rear sketches” by the Original Butt Sketch, dancing and live music by The Buck Town All-Stars, the nine-piece New Orleans band renowned for its energizing mix of rock, soul, funk, R&B and Crescent City classics. Partygoers also will enjoy a photo booth, casino table, raffle, and live and silent auctions for fabulous items such as a one-week stay at a Marriott Club hotel with airfare for two, an 18k yellow gold and diamond designer necklace from Donoho's Jewellers and more.

Missy and Wayne Herndon of The Woodlands started The Will Herndon Fund in August 2009 after their son, Will, was diagnosed at age six with Batten disease. Juvenile Batten disease occurs in two to four of every 100,000 children born in the United States but early symptoms usually do not appear until between the ages of 5 and 10.

Kids born to parents who unknowingly each carry a gene mutation for Batten disease are at risk to inherit the condition which initially causes vision loss and seizures, then progressively impairs cognitive and motor capacities, and ultimately results in death during the late teen years or early 20s. Because Batten disease is uncommon, there is not much federal funding for research aimed at treatment, a cure and prevention.

"We're both humbled and thrilled by the very generous support that we continue to receive from the Greater Woodlands community in our fight to save Will's life and the lives of other children with Batten disease,” said Missy Herndon. “Our heartfelt thanks go out to those who will join us at this year's gala. We'll all have a great time while raising critically-needed funds for this important medical research."

Since its founding, the Will Herndon Fund has raised more than $500,000 to support a variety of research initiatives in Europe and the United States to treat and cure the condition. These initiatives include promising research at the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital in Houston.

The fund also sponsored the first conference focused on drug discovery for treating juvenile Batten disease, which launched initial efforts to test tens of thousands of existing compounds for their effectiveness in treating the disease.

Additionally, the fund has enabled a partnership with a German biotech company to develop an antibody of the Batten disease protein. This will help researchers evaluate treatments and monitor progression of the disease. In recent months, the fund has awarded new grants to King's College in London and the University of Iowa to investigate innovative drug therapies that address the function of the cells at the heart of Batten disease.

The Will Herndon Fund is a fund of the Beyond Batten Disease Foundation, launched in 2008 by Craig and Charlotte Benson of Austin after their then five-year-old daughter, Christiane, was diagnosed with Batten disease. The foundation raises money for research to cure juvenile Batten disease and additionally has been leading development of a test to detect the gene mutations that cause the disorder as well as 600-plus other serious and often fatal childhood conditions.

About The Will Herndon Fund and Beyond Batten Disease Foundation

The Will Herndon Fund is part 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 600-plus other rare but serious and often fatal childhood ailments. For more information, visit http://www.beyondbatten.org.

# # #

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Visit website