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.

The amount of progress that the foundation has made is impressive, with great strides that have been made since its inception. Beyond Batten Disease Foundation is spearheading a unique strategy that incorporates independent scientific resources with related funding organizations to drive the research into eradicating Batten Disease. Mistakes in the DNA that cause the disease have already been identified, and some researchers have even been able slow the disease in animal models. BBDF has have been able to do this more efficiently than many other groups out there, but there still is much work and research to be done.

The foundation recently developed a Beyond Batten Development Board to help collaborate and create effective strategies for reaching out more broadly to help spread the word and gain more supporters.  Resident Sabrina Brown is the current President of the BBDF and Kelley Daniel is the President -Elect. Kelley Daniel explains “It has been very rewarding to see all of our efforts during this inaugural year come together. From Team Captains, to exchange station coordinators, to kids 2k volunteers, the Development board pulled together and raised $330,000 during the Run to the Sun, which was our main fundraiser this year. I know that with each and every event that the Development Board plans, we will be able to extend our reach and raise both awareness and funds for the research that we need to find a cure.”

When asked about the Run to the Sun, which resident Lance Thompson envisioned, Chair-elect of the event Jimmy Windham explains how fun and meaningful of an experience the event is. The symbolism of running through the night and ending the race in the morning is a symbolic of defeating one of the first noticeable signs of juvenile Batten disease, which is vision loss. The Run to the Sun typically takes place in April and this past spring also included a 2K fun run that is a great way for families to volunteer together.

When asking Kelley what would be something that the neighborhood might not know about the BBDF she had some great feedback. “The Beyond Batten Disease Foundation states that its mission is twofold. First, Prevention and Diagnosis of Bat- tens Disease and, second the Treatment and Cure of Battens Disease. While Battens Disease affects a small number in the population, it is part of a larger group of neurodegenerative diseases some of which are Multiple Sclerosis, Parkinson’s and Alzheimer’s. Our work helps not only research for Battens Disease, but all other neurodegenerative diseases. Our research has revealed that all of us carry 3 and maybe more gene mutations that can cause devastating rare diseases.  So our work at the foundation is far reaching, and directly affects all of us.”

We look forward to seeing the continued progress of this foundation and all it is doing to make waves for the cure of Batten Disease.  For more information on how to support the foundation, please visit

To view the full article in Life in the Heights, click here.

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