a campaign to fund the treatment for Batten disease
Be A Hero
In 2017 Christiane’s brother, Garland Benson, set out to raise $1 million.
He asked 100,000 friends to donate $10 each. On December 31, 2018 Garland surpassed his goal and continues to receive donations.
We did it!
Thank you from Garland
If you’re inspired by Garland and Christianne, and would like to make a donation to the Be Project: Be a Hero campaign please click the button below.
$6 Million Raised
Because of your incredible support and generosity, we exceeded the Be Project goal. With your help we are actively working with the FDA to pursue a clinical trial for the treatment, BBDF 101.
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
by leveraging partnerships and co-funding resulting in $20 million in research over the last 8 years
How does this have an impact beyond Batten disease?
BBDF’S strategy has been successful by partnering and receiving co-funding from Batten and other neurodegenerative disease groups.
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.
Why $6 million within 24 months?
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|
make a one-time financial commitment to the campaign or pledge a monthly or annual gift
You Shop. Amazon Gives. Link your amazon account to our foundation and give back while you shop
host a gathering to engage others in our mission or connect us to other major donors and foundations
request a BE the change jar to encourage your young children to get involved and give back
join the movement and act now to save lives, be inspired by a little brother determined to save his sister
join us in encouraging prayer and support through your church, school, or spiritual group