BBDF 101 – Next Steps to Clinical Trials

In July, BBDF sponsored the Batten Disease Support and Research Association Family Conference where we had an opportunity to update affected families on the progress of our drug development program for the combination therapy BBDF 101.
Visiting one on one with parents at the conference allowed us to share information on the next steps required by the FDA to initiate clinical trials. We were also able to acknowledge the generosity and support of the BBDF community that created the opportunity for these children to receive the first ever treatment for juvenile Batten disease. On behalf of all the families we talked with, thank you for making this treatment a reality for their kids!
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FDA Meeting Update


In May BBDF had its first meeting with the FDA to get input and direction on our plan for clinical trials. This meeting was a huge milestone and an important first step in the process to develop BBDF’s drug combination for the treatment of juvenile Batten disease. (Pictured above: key opinion leaders and BBDF team at the FDA)

We are happy to report that the FDA gave very positive feedback and it was clear they want to help us reach our goal. To put it into context, our regulatory consultants reported that they had never attended a meeting where the FDA was so interactive, motivated and engaged. The FDA guidelines provide a clear path forward for our program and do include some action items for us to address which will help set us up for success when we submit the final package. BBDF, our consultants and advisors are rolling up our sleeves and getting to work in order to get these Batten kids treated as quickly as possible!

June Update – Only 6 months to go!


Only 6 months until we wrap up our first ever capital campaign to fund the treatment for juvenile Batten disease. Time is of the essence as we still need almost $2 million to reach our $6 million dollar goal but with fundraisers on the calendar and help from our generous supporters we know we can do it! Take a look at our June highlights from last month’s newsletter! READ MORE

Calling all Heroes!

It’s true what they say, “What starts here changes the world.” Garland has enlisted the help of hometown hero and University of Texas quarterback, Sam Ehlinger, to reach more friends so that he can help fund a treatment that could save his sister’s life! Hook ‘Em!

You can make a donation and stay up to date with Garland’s progress at beahero.beyondbatten.org OR you can text HERO to 501501 and $10 will be added to your next phone bill.

Over $70,000 raised in February!

It is an exciting time for the Foundation and our affected families as we near the possibility of a clinical trial for the first-ever treatment for juvenile Batten disease. Our February newsletter highlights a new donor advised fund, Bind Up Batten, three community fundraisers, a plethora of ways to get involved and of course your monthly update on the Be Project, which is now up to $3.7 million dollars towards our $6 million goal! You can read the full newsletter HERE!

Thank you for supporting BBDF in 2017!

Our first newsletter of 2018 is here and we are thrilled to announce that we have raised over $3.5 million of the $6 million we need to fund the treatment for juvenile Batten disease! We could not have done it without our family and community supporters who fundraise for us, spread awareness and connect us to other foundations. You can read the full newsletter HERE!

Austin Kids host Bake Sale for Batten!

We love our young philanthropists who branch out on their own to raise awareness and funds for BBDF! Olivia and Finley Brown, Claire and Tripp Craddick, Wyatt and Flynn Eby and Owen Strauss hosted an impromptu bake sale in their neighborhood that raised $152! Flynn and Olivia made all of the cupcakes from scratch and then Wyatt and Finley helped them sell them. The other kiddos started as customers and then stayed to help out! If you want to find out how your child can Be the Change please click HERE for more information on our kids fundraising campaign.

Austin American Statesman – Austin boy trying to raise $1 million for Batten disease treatment for sister

When his parents set out to raise $6 million in two years to fund a Food and Drug Administration clinical trial for a possible treatment for Batten disease, Garland Benson, 13, decided last March he was going to raise $1 million of that to help find a treatment for his sister, Christiane. He would do it, he decided, by asking 100,000 people to give $10. READ THE FULL STORY HERE

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