Jacob, Jordana & Senator Hillary Rodham Clinton

Jacob and Jordana with Senator Schumer

Jacob and Jordana meet with Senator Arlen Specter

Click on the photo above to see the video from the Congressional Testimony. (Must have Real Player)

My name is Jordana Sontag and I am the mother of Jacob, born in February of 1996 and then six months later diagnosed with Canavan disease, a fatal neurological genetic disorder that affects the white matter of the brain. After being told Jacob would never hold up his head, sit, crawl, walk or say a single word, I was horrified to further learn that he would develop seizures, loose his ability to see, hear, swallow and would die within the first decade of his life. Even worse than the diagnosis, was the reality that there wasn’t a single treatment to save my baby.

Categorized as an “orphan disease”, I had quickly learned that Canavan affected few and lacked any large-scale research efforts. In short, saving my child meant committing myself to a crusade for a cure that included the search for research, aggressive fundraising efforts and generating the awareness necessary for seeking funds and gaining the support of influential contacts in both the political and medical communities.

Within a month of Jacob’s diagnosis, I had located researchers from Yale University and the Auckland School of Medicine who had successfully treated two Canavan children with gene-therapy (in New Zealand) and were planning to treat 15 Canavan children (some of which are here with us today) in a US Phase 1 Clinical Safety Trial. Following a lengthy review process through the NIH, FDA and the Internal Review Boards at Yale, Jacob was treated in January of 1998 and treated once more in September 1998. Jacob showed dramatic improvements, but most impressive was his ability to generate new white matter in his brain. And, he was one of four treated Canavan children to do so.

Click here to read the rest of the Testimony