Newsroom Archives: Videos

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

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

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.

WATCH THE FULL STORY HERE

Garland Benson was recognized by the ABC News affiliate, KVUE for his efforts to raise $1 million to fund a treatment for his sister, Christiane, who suffers from juvenile Batten disease. Garland has raised almost $227,000 so far and is getting closer every day! Check it out and see how you can #BEaHero today and help fund a treatment for Christiane and all of the other children who suffer from Batten disease. Watch the Video HERE.