The patients and families of those suffering from a fatal genetic disorder are meeting with dedicated researchers this weekend to continue their efforts to find a cure for the disease.
A research summit and family conference for those suffering with Canavan Disease will be held at the Renaissance Marriott in West Harrison from Friday through Sunday.
The summit is hosted by Jacob's Cure, a non-profit organization founded in 2000 by Harrison's Jordana Holovach to save her son, Jacob, who was diagnosed with Canavan Disease at six months old.
"Since Jacobs diagnosis, I have fought tirelessly to keep him alive," Holovach said. "Currently, our fundraising efforts and research are focused on a stem cell treatment we hope will cure Jacob and perhaps reverse the effects of the disease."
Canavan Disease is a neurological disorder that deteriorates motor skills.
A collaborative discussion will be held among the scientific community to find progress for curing the disease.
"We hope that not only will the researchers share their recent findings, but they will also have an opportunity to develop new collaborations," Assistant Director of Jacob's Cure Sarah Goshman said. "We anticipate that the presence of so many of the Canavan families will be inspiring to them."
Two different approaches will be combined at the summit, with one goal being to bring together researchers , and another being to bring families affected by the disease together to act as resources for one another.
"We also hope to create a safe space for the families and an opportunity for them to connect with others in the same situation," Goshman said. "Many of the families are geographically isolated from one another because this disease is so rare, so some of them will be meeting for the first time."
The weekend began with a welcome dinner at the hotel for families, which was sponsored by Geron Corp.
The first summit by Jacob's Cure was held in 2008 and included many of the same doctors and researchers featured in this weekend's event.
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