BBDF Featured in Life in the Heights

Bensons Fall 2013Making a difference: Beyond Batten Disease Foundation

By Amanda Koziel in Life in the Heights
Published September 2014

The Beyond Batten Disease Foundation is a foundation near and dear to many individuals and families in the Pemberton Heights neighborhood. Residents Craig and Charlotte Benson established the foundation in August 2008 after their then five- year-old daughter, Christiane, was diagnosed with juvenile Batten disease. Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. The family began tirelessly working with supporters in the neighborhood and beyond to find a cure for this disease and help families everywhere with children with batten disease. Continue reading

BBDF Heads to San Francisco

San Fran copyAttending the 7th Central Nervous System Partnering & Deal-Making Conference on September 18-19, Danielle Kerkovich, PhD, traveled to San Francisco. With Beyond Batten Disease Foundation’s focus on partnership and collaboration, this conference was a great opportunity to spread awareness of Batten disease as well as promising BBDF-funded research.  Held annually, the conference gives global biotechnology and pharmaceutical companies an opportunity to network with high-level executives from top pharma and various biotech/pharmaceutical companies, explore potential collaborations, and learn about relevant Central Nervous System disease issues that will affect the industry.

While in San Francisco, Dr. Kerkovich also met with Dione Kobayashi of Audentes Therapeutics. Audentes is a biotechnology company committed to the development and commercialization of innovative new treatments for people with serious, rare diseases, such as juvenile Batten disease. A young start-up, this company is driven by its goal to improve the lives of patients. They, too, want to see life beyond Batten.

My Perspective: Laura King Edwards

Running for Taylor in 50 States: Tennessee’s Great Smoky Mountains

laura1When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

I kicked off my quest at Oregon’s Crater Lake Rim Run on August 9; on Friday, I drove to Tennessee’s Great Smoky Mountains National Park for race number two.

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My Perspective: Noriko Merida Morales

405852_10150611922741694_729179285_nIf I had to use three words to describe Beyond Batten Disease Foundation, I would use passionate, inspiring, and driven. The first time I heard about BBDF was at a volunteer fair hosted at The University of Texas where I had the opportunity to meet two representatives from the foundation. When I asked them to tell me a little bit about BBDF, I was immediately inspired by how passionate they were when talking about the children they had met, the foundation’s amazing accomplishments to date, and the goals for the future. After asking more about the science behind juvenile Batten disease, they prompted me to contact Dr. Danielle Kerkovich, Principal Scientist at BBDF, who offered me a science research internship position.

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Beyond Batten Disease Foundation awards a $1.75M grant to the Jan and Dan Duncan Neurological Research Institute


Will Herndon, along with his mother Missy, presents the $1.75M grant to team at The Jan and Dan Duncan Neurological Research Institute.

Beyond Batten Disease Foundation awards a $1.75 million grant to the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital in Houston, Texas to explore whether the pharmacological activation of TFEB can be used to activate the lysosomal system and to promote cellular clearance in JNCL, which in turn will slow disease progression. Drs Ballabio and Sardiello will use these funds to: 1) validate these drug targets, 2) screen thousands of compounds for their ability to reach and activate these targets, 3) explore the effects of the most promising compounds on the health of juvenile Batten mouse models, 4) explore the effects of the most promising compounds on juvenile Batten iPS cells, the first human brain cell model for juvenile Batten disease, and 5) continue their search for the reason why the loss of CLN3 protein causes juvenile Batten disease.