What Community Can Mean for One Family — The Woodlands Will Power
HOPE/BBDF have proudly shattered community fundraising records and are giving children like Will hope for a future.
Successful philanthropy says as much about the community that steps up to the plate as it does about the charity pitching its cause. For the past 9 years, The Woodlands has rallied behind one remarkable family to help raise over $6 million dollars.
HOPE: The Will Herndon Research Fund is a nonprofit organization in The Woodlands that raises money to fund research to find a treatment and cure for juvenile Batten disease.
At the center of all of this is a smart, kind and beautiful boy named Will Herndon, who in 2009 at the age of 6, was having trouble remembering certain words—words that his brothers and parents knew he already had mastered. After many doctor visits, it was confirmed that Will had juvenile Batten disease, a rare and fatal degenerative brain disorder that induces vision impairment and seizures, eventual blindness, cognitive regression and mobility loss.
Upon diagnosis, Will’s parents, The Woodlands residents Missy and Wayne Herndon, were told there was no treatment, no cure and no hope for a future for their son. The medical community does not mince words, and, simply put, Batten disease takes away childhood – and then, the child.
This was unacceptable to the Herndons. Quickly, they founded HOPE: The Will Herndon Research Fund to help fund research to find a cure. Within days of forming this charity, Missy and Wayne’s friends offered to help and formed a vast network of helping hands that held fundraising events ranging from children-run lemonade stands to adult-organized sophisticated galas and golf tournaments. Over the years, a group of about 165 volunteer women have come forward to help organize HOPE events. These super volunteers are now known as The HOPE Ladies and have collectively become the backbone of this inspirational community wide fundraising campaign.
The HOPE foundation is run by Director Jessica Kemp-Park, Will’s aunt, who, like her sister Missy, and her brother-in-law Wayne, is a fierce advocate for Will and children everywhere battling this rare disease. In 2009, HOPE joined forces with Beyond Batten Disease Foundation (BBDF) whichwas established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure.
Although juvenile Batten disease was discovered more than 200 years ago, it wasn’t until the late 1990s that rapid technological advances and other techniques helped investigators add significant knowledge to the understanding of this disease. In order to translate these discoveries into therapies, BBDF has created a cohesive strategy that identifies and prioritizes knowledge gaps and action items in the pathway from here to a cure and is executing an efficient plan towards treatment for this disease. BBDF is working with research institutions, the pharmaceutical industry and government agencies to streamline the process from initial discovery to progress towards a cure. In 2014, BBDF, together with The New York Academy of Sciences, hosted a workshop at the New York Academy of Sciences Conference Center. This unique think-tank conference featured academic and pharmaceutical researchers who share an interest in designing safe and effective therapies that will target and treat a wide spectrum of human diseases including juvenile Batten disease, adult neuro-degenerative diseases (like Huntington’s disease) and cancer.
Earlier this month, Will, who is now 15 years old, underwent examination at the National Institute of Health (NIH) in Bethesda, Maryland to participate in a week-long study focusing on the natural progression of Batten disease in hopes to find leads to additional research avenues and biomarkers to support future treatments that will improve quality of life and extend life – with the wish to change Batten Disease from terminal to chronic in its categorization.
Due to the enormous funds HOPE has raised locally, in combination with BBDF’s efforts, Will’s immediate plans include participating in a groundbreaking pre-Food and Drug Administration (FDA) clinical trial phase drug discovery that aims to help slow the progression of the disease. The drug has taken 9 years to discover and come to trial. It is the work of a science team that has been working out of Texas Children’s Hospital in the Houston Medical Center.
To say HOPE/BBDF’s fundraising has had an impact on fighting Batten Disease is an understatement. Just 9 years ago there was no treatment, no cure and no research on the horizon. The Herndon Family and The Woodlands community that supports them is helping change the story path of this fatal neurodegenerative disease by raising awareness and raising funds for research to find a cure.
“I am continually humbled by the generous hearts of those living and so giving in our area,” explains Missy. “We must find a cure.”
HOPE/BBDF have proudly shattered community fundraising records and are giving children like Will hope for a future. This fall will mark the 10th annual HOPE Under the Stars event in The Woodlands and this years’ function is expected to be record-breaking with a crowd of over 950 guests on Saturday, October 20th at The Woodlands Resort.
To learn more and/or to get involved, visit willherndon.org.