Family uses bands as a fundraiser and to raise awareness

Rare, degenerative Tay-Sachs disease stole Conner Hopf’s ability to see and hear and, eventually, to move before he died quietly at home Sunday, two months before his second birthday.

“We’ve raised awareness among many people, encouraged many people to get screened,” Desiree Hopf said yesterday. “We’re certainly nowhere near finished.”

The Hopfs started a foundation called Conner’s Way to raise funds and share information about the disease, which affects the central nervous system; there are no effective treatments.

Supporters of Conner’s Way, including Gov. Robert L. Ehrlich Jr., have been wearing blue rubber bracelets to promote the cause. The family is planning a couple of fundraisers in the coming months, and would like to arrange community screenings next year.

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