My sister, Taylor, is the face of Taylor’s Tale. If not for her diagnosis in the summer of 2006, I would have never become involved in the fight to cure Batten disease.

What I’ve learned along the way, though, is that Taylor is only a part of the story. Infantile NCL (INCL), the form of Batten disease caused by a single error among the millions of instructions encoded in Taylor’s DNA, is robbing the lives of children all over the world. That may soon come to an end, though.

Batten disease was first discovered in 1826; 147 years later, the scientists Santavuori and Haltia characterized the genetically distinct form of the disease now known as INCL. Then, in the mid-1990s, two landmarks occurred: scientists identified 1) the gene responsible for INCL and 2) the key lysosomal enzyme missing in children with the disease.

Today, INCL research surges forward like never before. This year, there are four separate research projects specifically focused on INCL – something that has never happened. For the first time, children like Taylor have hope. Work is being done, and progress is being made. So what changed?

Central to the story is the birth of a group called Taylor’s Tale in Charlotte, N.C.

Dr. Sandra Hofmann of the University of Texas Southwestern Medical Center is in the third year of her quest to develop a way to replace the enzyme missing in children with INCL and correct the disease. The first and second years of the project were funded by Taylor’s Tale for a total of $105,000; this year, Dr. Hofmann has begun preclinical studies with a $60,000 grant funded by Taylor’s Tale and several funding partners.

As recently as 2006, a $60,000 grant for an INCL research proposal was completely unheard of. That may be hard to believe in a world where millions of dollars flow into the medical research community every year, but for the children who’ve been losing their lives to the various forms of NCL for 200-odd years, it’s the costly truth. Today, though, Taylor’s Tale has the chance to help rewrite history for good. Dr. Hofmann’s work represents just one of four INCL projects that received funding in July for 2009-2010 – a new record.

The cure is in sight, and as long as the current level of financial support for research is maintained, we could have our answer within a few short years. We have some children to save and a happy ending to write. Thank you for being a part of our story.