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

Thank you!

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.

Beyond Batten Disease Foundation

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.

Medical Breakthrough:

Treatment now in sight!

  • These efforts have resulted in a treatment which slows the progression in Batten disease models.
  • This treatment needs to go through an expensive validation and development process in order to enter a clinical trial.
  • To complete this project and prepare for clinical trial success we need to raise $6 million within 24 months

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

TOTAL: $6,000,000

a donor

make a one-time financial commitment to the campaign or pledge a monthly or annual gift

an amazon

You Shop. Amazon Gives. Link your amazon account to our foundation and give back while you shop

a connector

host a gathering to engage others in our mission or connect us to other major donors and foundations

the change

request a BE the change jar to encourage your young children to get involved and give back

a hero

join the movement and act now to save lives, be inspired by a little brother determined to save his sister

the hope

join us in encouraging prayer and support through your church, school, or spiritual group

100% of your Be Project donation will go directly to funding this effort.