Houston's a city of great giving and the CultureMap Charity Challenge, presented by Yellow Cab, aims to highlight that. CultureMap selected 12 deserving nonprofits to compete for a grand prize as they all raise awareness for worthy causes. CultureMap is highlighting the charities over the next several weeks. Today: The Will Herndon Research Fund.
Four years ago, 6-year-old Will Herndon and his family received a devastating diagnosis. Will — a bright, energetic child — was diagnosed with a rare, genetic, neurodegenerative disorder called juvenile Batten disease. An otherwise healthy child with Batten disease will begin experiencing vision loss, declined cognitive skills, and seizures. Children progressively suffer from loss of memory and speech until they are mentally and physically incapacitated, eventually leaving them wheelchair bound and then bedridden.
With no current treatment or cure, Batten disease is always fatal, generally by the late teens or early twenties.
Since its founding, the organization has raised nearly $3 million for Batten disease research with the help of Will's Warriors.
In 2009, the Herndon family joined forces with the Beyond Batten Disease Foundation and created The Will Herndon Fund for Juvenile Batten Disease Research — also called HOPE — working to bring the best and brightest in the medical community together to fight the disease.
In the greater Houston area and beyond, The Will Herndon Fund works tirelessly to raise awareness and funds to accelerate the research to find a cure. The scientific team charged with this task works within the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital. The team has made significant advances since its inception only a few years ago, and in 2012, they discovered potential drug candidates that may be able to slow the progression of the disease. These promising discoveries require further funding for a clinical trial.