BBDF Welcomes Sophia’s Dream

BBDF welcomes Sofia’s Dream to our family of donor advised funds. By connecting affected families and communities, we are able to pool resources and better position ourselves to increase awareness and accelerate research. Sofia, her family and BBDF share the same dream – to find a cure and eradicate juvenile Batten disease – and together we will. We are so grateful to have Sofia’s family as part of our community.

Sofia was diagnosed with juvenile Batten disease (CLN3) in 2015, and despite her vision loss and poor memory she remains eager to explore the world alongside her family, including her twin brother, Max. Click here to learn more about Sofia.


Thank you from the Bensons

Dear Friends,

We would like to express our deepest gratitude for your help in successfully completing the Be Project. Eleven years ago, as parents faced with a daunting diagnosis and the enormous challenge of helping our child, we simply could not have reached this important milestone without you. Your love, support and devotion to our family and mission has been overwhelming, and we are so very grateful for you and feel incredibly blessed.

In 2016, after 8 years of funding research for Batten disease, our research team was ready to take the next steps to advance our discovery of a treatment to slow the progression of Batten disease. As you know, The Be Project was launched to raise $6 million in 24 months in order to validate their findings, create patient registries, and advance a host of other necessary steps to prepare for FDA engagement and clinical trials. And, we did just that. WE DID IT!!! We achieved our goal, and we hope you feel so proud and take ownership in this enormous accomplishment!   

Our initial meeting with the FDA was very positive, and they have given us a clear road map to advance from here to clinical trials. We are checking off the FDA’s “to do list” as quickly as possible and are actively pursuing a pharmaceutical partner who can provide the funding and drug development expertise we need to initiate the trial. We are so very close, and anticipate a start date some time very soon. 

With much love and heartfelt gratitude from our family to yours, 

Charlotte and Craig

We did it! Thank you from Garland

Dear Friends,

Thank you so much for everything y’all have done for me and my family to get to my $1 million goal. On New Year’s Eve, I was a little bit worried that I wouldn’t make it to my goal, but all of sudden, when I checked my website, I was getting hundreds of donations and messages from people that I barely even knew. I was the one that got to tell my sister the news and it was the proudest moment of my life. Not only did you help Christiane but hundreds of other kids who have Batten disease will benefit from your generosity too.

Thank you so much for your kindness and support!

Sincerely,

Garland Benson

Dr. Marco Sardiello’s Research on Batten Disease Paves Way for New Treatments

A team led by researchers at Baylor College of Medicine has uncovered an unexpected mechanism that can explain a form of Batten disease called neuronal ceroid lipofuscinosis 8. The findings published in the journal Nature Cell Biology provide potential new targets for future therapeutic interventions for this rare and incurable disease.

Click here to read the full article. 

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!

BBDF and the Louise H. Batz Foundation bring you Family Night 2018!

In it’s 4th year, the annual fall fundraiser, Family Night, is set for Sunday, September 23, 2018 and BBDF is excited to announce that this year’s event will be co-hosted by the Louise H. Batz Patient Safety Foundation based in San Antonio, TX. If you haven’t attended Family Night in the past, we have made quite a few changes and cannot wait for you to join us in “Splashin’ for a Passion!” For more information, including sponsorship packages and ticket information please visit beyondbatten.org/events/family-night.

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.

BBDF Welcomes Chase the Cure

BBDF Welcomes Chase the Cure to our family of donor advised funds. By pooling resources and connecting communities we are able to expand our impact and reach to accelerate research. We are so grateful to have them join forces so that we can one day eradicate juvenile Batten disease for Chase and the hundreds of other children who are affected.

Together Chase the Cure and Beyond Batten Disease Foundation are spreading awareness and raising funds for medical research to eradicate this disease. To find out more about Chase the Cure and the Peterson family visit the website.

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