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.
For Immediate Release
Contact: Mary Beth Kiser – 512-275-2600 – mbkiser@beyondbatten.org
Amy Phillips – 614-657-7707 – amy.r.phillips1@gmail.com
Columbus Family Creates Fund to Support Research for Fatal Childhood Illness: Beyond Batten Disease Foundation Announces the Addition of Hugs for Hudson Fund, Founded by the Family of Hudson Phillips.
Austin, Texas – April 6, 2016 – BBDF is proud to welcome the Hugs for Hudson Fund. BBDF, the world’s largest funder of juvenile Batten disease research, is able to make informed decisions about research projects that have the highest likelihood of becoming therapies. When a fund is created through BBDF, founders are offered an array of projects that are in line with their goals of driving research to finding treatments and discovering a cure, and are able to apply funding to the research areas that interest them the most.
November 16, 2015 – Austin, TX – Beyond Batten Disease Foundation is supporting research by Dr. Emyr Lloyd-Evans and his colleagues at the School of Biosciences at Cardiff University in Wales. The project explores a new hypothesis that has implications for several neurodegenerative diseases which exhibit excess Ca2+ levels, including Batten disease, Alzheimer’s, Parkinson’s, Huntington’s, ALS and other lysosomal storage diseases.
October 19, 2015 – Austin, TX – Beyond Batten Disease Foundation (BBDF) has begun funding Susan Cotman, PhD, an Assistant Professor of Neurology at Harvard Medical School and Assistant in Neuroscience at the Massachusetts General Hospital. The focus of Dr. Cotman’s study is to determine the cellular location and function of the CLN3 protein. Although the CLN3 gene and associated mutations responsible for juvenile Batten disease were discovered 20 years ago, the primary function of the protein remains elusive. Utilizing recent advances in proteomics and biochemistry along with new antibodies and cell models developed by BBDF, Dr. Cotman hopes to better understand the CLN3 protein.
The successful completion of this project will substantially accelerate juvenile Batten disease research because key reagents and information for the study of CLN3 function and dysfunction will be established. Dr. Cotman’s work will increase our understanding of CLN3, a critical step in the path towards the creation of rational, targeted therapies.
ABOUT BEYOND BATTEN DISEASE FOUNDATION
Beyond Batten Disease Foundation (BBDF) is the world’s largest organization dedicated to funding research for a treatment or cure for juvenile (CLN3) Batten disease. Since its inception in 2008, BBDF has applied over $15.5 million towards juvenile Batten disease research by direct donations, leveraging donor-funded successes, and forming strategic partnerships. BBDF is spearheading a unique, cohesive strategy, incorporating independent scientific resources and collaboration with related organizations to drive research in juvenile Batten Disease. For more information, visit www.beyondbatten.org