In 2008, Beyond Batten Disease Foundation was formed by Charlotte and Craig Benson in response to their daughter’s diagnosis of Batten disease and supported by a community who shared the belief that something had to be done. BBDF was established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure.
Today we are the world leader in juvenile Batten disease research funding.
According to The American Institute of Philanthropy most highly efficient charities spend 75% or more on programs
BBDF has matched every donation
While developing a treatment for Batten, BBDF funded discoveries have been able to inform and accelerate progress in other neurodegenerative conditions such as Parkinson’s and Alzheimer’s, additional rare diseases and more common illnesses.
Here’s the math:
|Fund the Treatment|
|Validate initial academic work to pharmaceutical standards while determining optimal dosing, efficacy and safety information||$2,500,000|
|Support critical science at Texas Children’s Hospital to inform and complete validation studies||$1,200,000|
|Prepare for clinical trial success|
|Support development of an international patient registry||$75,000|
|Further critical biomarker studies||$250,000|
|FDA Regulatory consultation and clinical trial preparation||$275,000|
|Sponsor initial phase clinical trial expenses||$1,000,000|
|Continue to support research for a cure|
|Continue to support other rapidly evolving technology in stem cell, gene therapy, and gene skipping||$500,000|
|Provide scientists with important Batten specific research tools||$200,000|
WHERE ARE WE?