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But the Westchester mother refused to give up hope, believing in her aching heart that a cure would be found - and that she could help make a difference. So along with caring for her beloved son, Holovach made it her life's mission to raise awareness and money to help fight the dreaded disease. Since then, Holovach has personally raised more than $1 million for the cause. Rosalind Poss Rosen of the Canavan Foundation nominated Holovach for the Liberty Community Medal because her "tireless efforts have done so much to raise awareness and funds." Holovach's lobbying efforts - she has testified before Congress - resulted in a $2.3 million research grant from the National Institute of Health. Her son, Jacob Sontag, now 8, continues to be a profile of courage. And while a cure has yet to be found, Holovach remains optimistic. "I'll never lose hope because I believe we will find a cure for the disease," said Holovach, who has established Jacob's Cure, a nonprofit foundation, to raise awareness and money for Canavan research." "And to find a cure for Canavan and so many other diseases, we need to use all available resources, including stem cells, which could be the penicillin of the 21st century. Today, Jacob is still unable to walk, talk or lift his head. But, thanks to an advanced gene-therapy procedure, his quality of life has improved. "Jacob and other patients afflicted with Canavan have lived longer than most experts ever thought they would," said Holovach. "That's even more reason for hope." Canavan disease is caused by a deficiency of an enzyme called aspartoacylase, and children stricken with it have a life expectancy of three to 10 years. The extremely rare genetic disorder is most prevalent in Jews of Ashkenazi decent.
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