Christiane’s Story by Texas Children’s Hospital
See the video that Texas Children’s Hospital put out about Christiane and Beyond Batten Disease Foundation and the work being done at the Jan and Dan Duncan Neurological Research Institute.
New York Stem Cell Foundation and Beyond Batten Disease Foundation Announce the Availability of Stem Cell Lines for Research
The New York Stem Cell Foundation (NYSCF) and Beyond Batten Disease Foundation (BBDF) today announce the availability of a unique and comprehensive collection of juvenile Batten (CLN3) disease induced pluripotent stem (iPS) cells. The two organizations partnered to develop this resource for scientists around the world. The collection is a key example of BBDF’s strategy to advance therapy development for Batten disease by creating and disseminating cutting-edge tools and other resources with game-changing potential.
Research Update from Dr. Marco Sardiello
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BBDF has partnered with Texas Children’s Hospital (TCH) to provide informational videos on the work being done at the Jan and Dan Duncan Neurological Research Institute (NRI) in Houston, TX. In this video Dr. Marco Sardiello dives into BBDF funded research and the discovery of TFEB and it’s effects on lysosomal storage diseases, including Batten disease. |
May Newsletter
Take a look at our May Newsletter filled with event recaps, upcoming events in June and where we are today with the Be Project!
February Newsletter 2017
Our supporters shared the love this February! Be sure and keep up with the Be Project by subscribing to our monthly newsletter!
January Newsletter 2017
Keep up with the Be Project every month by subscribing to our monthly newsletter!
BBDF Funded Research Featured in Nature Communications
BBDF is very proud of the research we have funded over the last 8 years. We are especially honored to have worked with Drs. Marco Sardiello, Michela Palmieri and their colleagues at Baylor College of Medicine and the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital. These researchers are devoted to helping patients with Batten disease and are vital partners in our efforts. We are delighted that their work was published in Nature Communications this week. Nature Communications is ranked in the top .04% of 28,000 subject journals. Read the article: http://www.nature.com/articles/ncomms14338.
The paper is important to the understanding of how healthy cells manage waste disposal, but also because it proves an important concept for treating juvenile Batten disease in mouse models, propelling us forward down the drug discovery pipeline. Today, BBDF is building on this discovery by working on industrial validation and dosing studies with Evotec, a drug discovery alliance and partnership company, to quickly advance Dr. Sardiello’s findings through the regulatory process, and ultimately to clinical trials.
Dr. Sardiello and his team have made a significant discovery and taken a giant step toward our collective goal to treat Batten disease. We are grateful to him and his team for their dedication and perseverance. In response to congratulatory emails, Marco had this message for BBDF donors, “We are proud to be working with you! This could only happen because of your continuous support. More news coming in the next few months… stay tuned!”
To read more:
Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital press release:
http://nri.texaschildrens.org/faculty_research/sardiello_natcomm.aspx
Baylor’s press release:
https://www.bcm.edu/news/molecular-and-human-genetics/research-strategy-juvenile-batten-disease
YLC Hosts Family Movie Night!
Join us for the Youth Leadership Committee’s movie night featuring Cheaper by the Dozen 2, benefiting Beyond Batten Disease Foundation. Bring the family and enjoy a movie, popcorn, and a burger form the P. Terry’s truck!
Visit the official page or buy tickets directly at http://bluestarlitedrivein.vbotickets.com/tickets.asp?page=selectevent&eid=18573&edid=0
BBDF Welcomes Lauren Trice as Director of The Will Herndon Research Fund
FOR IMMEDIATE RELEASE
Contact:
Missy Herndon
Founder, The Will Herndon Research Fund
hope@willherndon.org
713-557-0219
LAUREN TRICE NAMED DIRECTOR OF THE WILL HERNDON RESEARCH FUND AT BEYOND BATTEN DISEASE FOUNDATION
THE WOODLANDS (January 12, 2017) – Beyond Batten Disease Foundation (BBDF) is pleased to announce its recent hire of Lauren Trice, who joins the team as the Director of The Will Herndon Research Fund. In this role, Trice will oversee the management, development, and operations for the fund.
“I am honored and humbled to serve during a critical time for the research of juvenile Batten disease,” says Trice. “I believe that with the continued support of our community, we will raise awareness and funds to accelerate the research for a treatment or cure.”
Trice, a resident of The Woodlands, comes to BBDF with experience in various marketing and public relations capacities since 2006. Most recently, she served as the Corporate Market Director for the American Heart Association (AHA) in Montgomery County. In this role, she was awarded the Rome Betts Award of Excellence, which is the most prestigious national staff award given by the AHA.
“Lauren brings a wealth of knowledge, skills and a mission-based focus to our organization that we feel confident will help us meet our ultimate goal to fund a life-saving treatment to save Will and the hundreds of other children affected with this disease,” said Missy Herndon, founder of The Will Herndon Research Fund. “Collaborative research efforts have led us to potentially one of the most promising treatments in the history of juvenile Batten disease. We are grateful to have Lauren leading the local efforts to help see this research come to fruition in Will’s lifetime.”
For more information on The Will Herndon Research Fund, visit www.willherndon.org or www.beyondbatten.org.
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ABOUT THE WILL HERNDON RESEARCH FUND
The Fund was established in 2009 by Missy and Wayne Herndon, in honor of their son Will, who was diagnosed with juvenile Batten disease at the age of 6. This rare, fatal, genetic disease attacks an otherwise healthy child, beginning with vision loss, declining cognitive skills and seizures. Batten disease is fatal, most often by the late teens or early twenties. Our goal is to SAVE WILL, and the hundreds of other children stricken with juvenile Batten disease. We have HOPE, but we need your help in this race against time. To learn more or to get involved, call 832-610-5995, or visit willherndon.org.
ABOUT BEYOND BATTEN DISEASE FOUNDATION
Beyond Batten Disease Foundation (BBDF) is the world’s largest nonprofit organization dedicated to funding research for a treatment and cure for juvenile (CLN3) Batten Disease. Since its inception in 2008, over $16 million has been invested in research by leveraging donations, co-funding and 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. Today there is a treatment in sight. BBDF funded research has discovered a drug that slows the progression of the disease in Batten models. The foundation has launched a 24 month $6 million campaign to advance the treatment to clinical trials. More information can be found at www.beyondbatten.org.