I remember the day that Taylor King was diagnosed with Batten disease. During the summer of 2006, I was an intern for Presbyterian Hospital, sharing an office with Laura, Taylor’s sister. Being in such close quarters, I remember overhearing a call Laura received one day and hearing the distress in her voice. As I asked her what was wrong, I learned what Laura knew – that Taylor had been diagnosed with Batten, a rare neurological disease. Little did she or I know that this was just the tip of a mountain of an iceberg that later would be revealed. I remember feeling scared for Laura and her family, and I couldn’t push them from my mind that day and the days after when Laura’s desk was empty.

 

But hope has a funny way of blossoming out of despair, even in the deepest and darkest of situations. In Taylor’s instance, it’s no coincidence or accident that the fight against Batten disease is alive and well today – it’s thanks to the work of Taylor’s Tale and the incredible research that’s been funded by a charity born out of an unfortunate twist of fate. Taylor’s Tale is just over three years old and one year removed from becoming an official government-recognized non-profit; in that time, the organization has already donated almost $150,000 in the form of grants to support the search for a cure for Batten disease.

Last fall, Taylor’s Tale celebrated a major breakthrough in research when a late infantile Batten disease researcher, Beverly Davidson, PhD, successfully crossed the blood brain barrier in mice. The blood brain barrier is a recognized obstacle in the way of developing viable treatments for brain-based diseases. Finding a way to overcome it is a necessary step in delivering the enzyme children with Batten disease are missing to brain cells where it is needed. A Taylor’s Tale-funded researcher, Sandra Hofmann, MD, PhD, is investigating a similar approach for infantile Batten disease. If this work is able to continue, it could have a domino effect on research for other brain-based diseases, such as Parkinson’s and Alzheimer’s.

Thanks to individual donations, corporate donations and proceeds from Taylor’s Tale events in 2009, we were able to join several partners in funding three exciting infantile Batten disease research projects for 2009-2010. These included a third year of funding for Dr. Hofmann’s work as well as new projects at Washington University in St. Louis and the National Institutes of Health (NIH). 

Raising awareness of Batten disease is an important part of the mission of Taylor’s Tale, and to that end, a new public awareness committee was formed in 2009. The committee is working on outreach to community organizations through speaking engagements and partnership opportunities to educate the community about Batten disease and Taylor’s Tale. The team also launched a new Web site in May and an E-newsletter in October. In 2010, this group will place more emphasis on telling Taylor’s Tale at a state and national level. 

With all that Taylor’s Tale has achieved to date, I’m excited to see what Taylor’s Tale will accomplish in 2010. Will this be the year of the cure? While we can’t know that answer for sure, with your help, each day we’re getting one step closer.

Shannon Connell

Public Awareness Committee Member

Editor of Believe