My Perspective: Maddie Keeble


Hear from our law school-bound intern, Maddie Keeble. She shares her inspiration and hope for eradicating JNCL.





“When it was dark, you always carried the sun in your hand for me.” –Sean O’Casey

I can’t think of a better way to describe the smile on Christiane’s face as she played with her father during this year’s Run to the Sun Relay – an overnight relay through the Texas Hill Country to raise money for juvenile Batten disease research.

Run to the Sun 2014Frankly, the reasons I initially became attracted to Beyond Batten Disease Foundation had more to do with my own personal needs than a passion for the cause. Sure, I had thought to myself, “I can’t imagine what these families are going through. It would be nice to try to help them out.” But, what I really needed was a part-time job to fill the six month interim between graduating from UT and moving to Dallas for law school. My best friend worked at BBDF and had often spoken of the friendly, productive work environment. So I looked into interning, beginning my assimilation from the characteristically “corporate-minded” crowd in my business classes to the “cause-minded” nonprofit world.

Working at BBDF served to dispel many of my preconceived notions about the nonprofit sector. It is a myth that not-for-profit organizations are not business-minded—the motivation is simply different than that of for-profit firms. Beyond Batten’s goal is to eradicate Batten disease entirely. When your organization’s mission is so powerful, what more motivation do you need?

The inner workings of Run to the Sun, BBDF’s primary fundraiser, involved more time and energy than any other event I have taken part in with everything planned down to the minute. But the amount of work was well worth seeing all of the teams come together in an experience that simulates the progression of Batten disease—from the fear of the unknown to the arduous path that Batten families must follow on a daily basis. The experience was priceless.

My hope is that sharing my experience at Beyond Batten Disease Foundation will encourage us all to continue the fight and to remember that we, too, can carry a little piece of the sun for Christiane as well as the other children and families impacted by Batten disease. 

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