We are Austin Interview with Garland Benson

July 2, 2019
News, BE Project

We Are Austin did an interview highlighting Garland Benson and the Be a Hero Campaign

Check out his interview here:

If you had a goal to raise one million dollars in two years, you might think it would be impossible! Now imagine you’re 12 years old and setting out on this incredible mission. Well, Garland Benson did just that, and his perseverance will help fund research to treat his older sister’s degenerative disease. Garland is here this morning to talk about his remarkable success raising funds for Beyond Batten.

Thanks again to everyone who helped Garland hit his goal!

BBDF is actively pursuing a pharmaceutical partner to support the clinical trial and commercialize the treatment.  Donations are rolling in and every additional dollar raised by Garland’s campaign will help offset activities required by the FDA to start the trial.

Donate today.

Thank you from the Bensons

January 28, 2019
News, BE Project, 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

BE Project – Thank You from the Bensons

January 25, 2019
Research, News, BE Project, Family Stories

BE Project – Thank you from the Bensons from Beyond Batten Disease Foundation on Vimeo.

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!

We did it! Thank you from Garland

January 9, 2019
News, BE Project, Videos

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

Good Food, Good Times, and Good People at Honest Mary’s Fundraiser

December 28, 2018
News, BE Project

Garland Benson was joined by family and friends as well as members of the community on Tuesday, Dec 18 for a fundraising event at Honest Mary’s. The Austin-based restaurant, which celebrates healthy eating with its menu of grain-based bowls, donated 100% of its evening profits to Garland’s Be A Hero campaign. It was a record breaking Tuesday for Honest Mary’s, and together we raised $385!

Garland Benson Shares His Story on CBS News

December 28, 2018
News, BE Project

Garland Benson shared his story with the world last night on CBS News, calling on each of us to help put an end to Batten disease and not just save the life of his sister, Christiane, but all those living with this traumatic and fatal illness. Click the story links below and discover how this incredible young advocate and loving brother took it upon himself to raise the final $1 million of a $6 million campaign to fund an FDA approved clinical trial.

CBS News: https://www.cbsnews.com/news/beyond-batten-disease-foundation-garland-batten-christiane-batten-fundraiser-austin-texas/

Youtube: https://www.youtube.com/watch?v=WGaf7Ti-Xk4

BBDF 101 – Next Steps to Clinical Trials

September 24, 2018
News, BE Project
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!
VIEW INFORMATIONAL POSTERS BELOW

Be a Hero on Fox 7 Austin

July 14, 2018
News, BE Project

An Austin 13-year-old is determined to find a cure for a rare & fatal disease in order to save his sister’s life. And University of Texas quarterback Sam Ehlinger is helping him. Watch the story with Amanda Salinas HERE!

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