Jacob’s Cure: Promoting Research & Raising Awareness for Canavan Disease

Canavan Disease is a devastating genetic brain disorder that prevents myelin, also know as white matter, from forming in the brain. Children stricken with Canavan’s disease are essentially trapped in their bodies, unable to lift their heads or move, they typically lose their eyesight and are unable to fight off illness. Most die within their first decade of life.

Hopeless cause you say? Not even remotely if the Jacob’s Cure foundation has anything to do about it. Founded by Jordana Holovach and named for her son, Jacob, the foundation works to support federal and private funding for research as well as raising awareness about the disease.

On the medical front there has been some dramatic breakthroughs in the last few years with a gene therapy clinical trial. In a clinical safety trial, of which Jacob was a participant, Canavan children saw very positive results including improved eyesight, weight gain, and miraculously, the development of new myelin. Unfortunately, federal funding is scarce even though the study was so promising.

What can you do, Clever Parent? Check out the Jacob’s Cure website to make a donation directly, learn more about the disease, or find out about Jacob’s Cure fund raisers in your area. You can also purchase the Jacob’s Cure Smiley bag (pictured above) from Baby Dish help raise funds. And while you’re at it, write to your Senator or Congressman and tell them that we don’t need Bridges to Nowhere but we do need funding for research into diseases like Canavan’s.

Learn more about Jacob’s Cure at www.jacobscure.org and watch the Clever Parents TV feature on Jacob’s Cure at www.cleverparents.tv