Join Austin Youth Fitness on February 8th for the 4th Annual Run to the Sun Fun Run benefiting Beyond Batten Disease Foundation. Our goal is to increase awareness of Batten disease and raise $10,000 to support treatment research. We hope you will join us and/or support the event by creating a fundraising page, becoming a sponsor, or encouraging others to attend. Learn more.
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!
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
BBDF recently participated in an informational webinar hosted by Global Genes. Mary Beth Kiser, BBDF President and CEO, was among several panelists, including representatives from Amicus Therapeutics, Nationwide Children’s Hospital, and Batten Disease Support and Research Association (BDSRA), providing updated information on Batten disease research and family resources.
Click here to download the slides or click the video link below to watch the full webinar.
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 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.
The Be Project is Beyond Batten Disease Foundation’s campaign to raise $6 million to fund the treatment and prepare for clinical trials for juvenile Batten disease. Thank you for contributing over $5.7 million. DONATE NOW to help us meet our goal by December 31.
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.
Learn about Garland Benson’s BE a Hero campaign to raise a million dollars to fund a treatment for his sister who has juvenile Batten disease. He is so close to reaching his goal with only $124,000 to go and a few weeks of fundraising remaining! Support him and his sister with a donation today – Donate Now.