We did it! Thank you from Garland from Beyond Batten Disease Foundation on Vimeo.
Impassioned by his sister’s life-long struggle with Juvenile Batten disease, Garland Benson pledged to raise $1M of the $6M needed to advance a promising treatment to clinical trials. He did it! Click the link below to hear his heartfelt thank you.
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.
Bianca Vidal recently wrote to us and was kind enough to let us share her story. Let’s give her and her son a warm welcome.
“My son Manuel is a 17-year-old young man who was recently diagnosed with this terrible disease. Even though at 10 years old he started losing his vision, I never imagine it could be something else. Last year his health started to decline dramatically – it was then that a Doctor found the disease in him. He is declining faster than I thought. He can barely walk and talk now, and he does not recognize who I am most of the time. It is heartbreaking to see him like this. Even though he has good and bad days, his positive attitude is always there. And he always has a big smile for everybody and loves to show off his ‘muscles’.”
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.
On Saturday morning, the weather was perfect just long enough for the Bensons to share some beautiful words of gratitude and to plant the “Triangle Oak” in honor of all of you. Thanks to those of you who came out. In case you weren’t able to be with us to include your name on the river rocks that were planted with the tree, we wanted to be sure to share their heartfelt message with you:
“They say the true meaning of life is to plant trees under whose shade you never expect to sit.
And, that’s exactly what you have done for our family! In our darkest hour, YOU planted this tree and placed Christiane beneath the only shade in an otherwise desolate and barren landscape. In a selfless act of compassion and love, you have supported us with an unfailing devotion to our family. And, after 10 years of hard work, and on the cusp of a clinical trial, you should be so proud for having put Batten disease on the map! There are simply no words to express the enormity of our gratitude for everything you have done over these last years.