Beyond Batten Disease Foundation Kicks off “Be Project” Campaign to Raise $6 Million Dollars to Fund a Treatment for Juvenile Batten Disease at Texas Children’s Hospital

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For Immediate Release

Angela Hale 512-289-2995

On the Cusp of a Scientific Breakthrough –Parents Race to Finish Line to Raise Money to Fund a Treatment That is Expected to Slow Down Deadly Batten Disease and Save Texas Children, Including Austin Girl and Houston Boy

September 8, 2016- Austin, TXThe Beyond Batten Disease Foundation (BBDF) today is launching the “BE PROJECT”, a new $ 6-million-dollar, 24-month campaign, in an urgent countdown to save children’s lives- including Texas children who live in Austin, Houston and Dallas.

Austin parents Craig and Charlotte Benson and Houston parents Missy and Wayne Herndon’s lives were forever changed when their daughter Christiane and son Will were diagnosed with juvenile Batten disease, a rare and fatal disease that currently has no treatment and no cure.

At the time of the diagnosis, the research and science landscape was a desolate place and devoid of any hope for their children or other families, so the parents took action and for the last 8 years they have worked tirelessly and raised and invested $16 million dollars in research searching for a treatment or a cure.

Now, they are on the verge of what is expected to be a life-saving treatment, but the Beyond Batten Disease Foundation (BBDF) that the Benson Family started must raise $6 million dollars within 24 months to take a leading drug compound to clinical trial that they believe will be an effective treatment for Batten disease.

“The exciting thing about that is the $16 million dollars that we have raised and invested has yielded a treatment.  We have a drug that has been developed to help these kids,” said Craig Benson, Co-Founder and Chairman of the Board of the Beyond Batten Disease Foundation.

The foundation has partnered with Texas Children’s Hospital in Houston where the medical breakthrough was discovered. Now funding is needed for the last round of research to make sure the drug is safe and effective so it can get FDA approval and advance the treatment to clinical trial.  The foundation needs the support of generous Texans to help them cross the finish line with a final $6-million-dollar push.

“What we find so exciting here, is not only is there potential to develop into a potent therapeutic treatment for children with Batten disease, but it will likely have an impact on a number of other disorders including adult disorders such as Alzheimer’s, Parkinson’s and other pediatric disorders.  It is very exciting, very promising work, but we need the next step to go forward,” said Barbara Cochran, Texas Children’s Hospital.

Today’s launch of the “BE PROJECT” Campaign to raise $6 million dollars is the most important mission yet to save Christians’ and Will’s lives.

Be Project Video- Watch the Launch Video


“Batten disease is a horrible disease that may cripple my child and leave her blinded and perhaps take her away from us too soon.  But, I am reminded that Batten disease cannot cripple our love, or blind our faith or take away courage or rob our peace or destroy love, friendship and community and it will never take away my hope,” said Charlotte Benson.  “We are committed to raising the necessary funding to hold a clinical trial and do everything within our power to save our daughter’s life.  Time is absolutely critical and we are hopeful Texans and others across the country will rise to the occasion and help us succeed in this mission to save lives.”

Craig and Charlotte Benson live in Austin, Texas and established Beyond Batten Disease Foundation in 2008 after their then five-year old daughter, Christiane, was diagnosed with juvenile Batten disease.  Missy and Wayne Herndon live in the Woodlands. They formed the Will Herndon Fund, at the Beyond Batten Disease Foundation, after their son Will was also diagnosed with the disease.

Together with hundreds of families affected by Batten disease, and many more supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane, Will and all children with this devastating condition.





Beyond Batten Disease Foundation (BBDF) is the world’s largest nonprofit organization dedicated to funding research for a treatment and cure for juvenile (CLN3) Batten Disease. Since its inception in 2008, over $16 million has been invested in research by leveraging donations, co-funding and strategic partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in juvenile Batten Disease. Today there is a treatment in sight. BBDF funded research has discovered a drug that slows the progression of the disease in Batten models. The foundation has launched a 24 month $6 million campaign to advance the treatment to clinical trials. More information can be found at