About the Foundation

Our Mission

Beyond Batten Disease Foundation was established to eradicate Batten disease. We seek to accomplish our mission in two ways:

  1. Raise awareness and money to accelerate research to find a cure for Batten disease. Learn more »
  2. Develop an easy and inexpensive blood test to detect the gene mutations for Batten disease, and hundreds of other rare conditions like it, that claim the lives of thousands of children each year. Learn more »

Our Team

Staff:

Mary Beth Kiser, Executive Director

Mary Beth Kiser joined BBDF in December 2012. She brings over 20 years of professional experience to the foundation including fundraising and business development, board and volunteer management, and program development. She had been with the Texas Land Title Association since 2003 where she was the Senior Vice President and Chief Operating Officer responsible for the day-to-day operations, including the association’s programs, products and services. Mary Beth currently serves on the Board of the Texas Society of Association Executives and earned her Certified Association Executive credentials in 2009. She is a graduate of the University of Texas and has been a community volunteer for over 25 years having worked with and led many central Austin organizations and fundraising events.

Danielle M. Kerkovich, PhD, Principal Scientist

Dr. Danielle Kerkovich has extensive experience working with federally funded research through the Department of Veterans Affairs as the Assistant Director for Rehabilitation Research and Spinal Cord Injury/Central Nervous System Disorders Portfolio Manager of the Veterans Administration 157-hospital system. At the start of current U.S. military conflicts through 2007, she identified current gaps in healthcare for soldiers returning from Iraq and Afghanistan, designed over 50 scientific review panels, authored congressional briefing books, and proposed unique funding mechanisms between the VA, the Department of Defense, and others. In addition, she has worked as an advisor to medical research foundations in pediatric cancer, cerebral palsy and burn injury. Dr. Kerkovich has been a peer reviewer for the National Institutes of Health, National Science Foundation, the National Institute on Disability Rehabilitation Research, and Defense Advanced Research Projects Agency. Dr. Kerkovich joins Beyond Batten Disease Foundation as Principal Scientist to develop investment strategies to create a pipeline of foundation-funded and collaborative research activity with the potential to move from basic science, to proof of concept, to clinical candidates for Juvenile Neuronal Ceroid Lipofuscinosis. She is also the Scientific Officer of Batten Disease Support and Research Association and Research Co-Chair of the Batten Disease International Alliance. She received her PhD and MS degrees in Biomedical Sciences from the Albert Einstein College of Medicine of Yeshiva University with a focus in Developmental Neuroscience.

Carolyn Frank, MBA, Development Assistant

Carolyn supports the efforts of the Will Herndon Fund bringing with her a decade of professional non-profit experience in the healthcare and higher education sectors. Personally, she has volunteered for several community groups developing a membership drive and instituting an annual fund. Carolyn holds a Bachelor’s degree in Administration of Justice/Economics from Salve Regina University and a Master’s of Business Administration from the University of Rhode Island.

Lizzy Franey, Development Assistant

BBDF welcomed Lizzy in January 2013 after her graduation from the University of Texas at Austin, where she earned a degree in Journalism. Lizzy brings a variety of skills to the foundation such as communications, social media and customer service which she honed while serving as an intern at publications such as Austin Home Magazine, Texas Highways Magazine and the Texas Historical Foundation.

Internships

Beyond Batten Disease Foundation offers internships each semester (fall, spring, summer).  The intern position offers an excellent opportunity for someone interested in furthering his or her skills and experience in fundraising, communications, public relations, event planning and nonprofit management.  If you are interested in gaining experience in these fields, please email your resume to info@beyondbatten.org.

Board of Directors:

T. Craig Benson, Chair

Mark B. Chandler, Ph.D.

Kyle Janek, M.D.

Cherie Flores

Jeff Hunt

Our History

Craig and Charlotte Benson established Beyond Batten Disease Foundation in August 2008 after their then five-year-old daughter, Christiane, was diagnosed with juvenile Batten disease. Together with hundreds of families affected by Batten disease, and many more supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane, and all of the other children with Batten disease. Watch the Benson family’s story »

In 2009, following their son’s diagnosis, Wayne and Missy Herndon of the Woodlands, Texas, joined with Beyond Batten Disease Foundation to create the Will Herndon Fund for Juvenile Batten Disease Research. Watch the Herndon family’s story »

The Beyond Batten Disease Foundation is a registered 501(c)(3) nonprofit organization located in Austin, Texas. Our tax I.D. number is 26-3223661.

Founders Circle

We’d like to acknowledge and thank the generous donors who contributed $2500 or more between August 2008 and June 2009 to establish the foundation.

See our list of founders »