A resolution sponsored by Senator Anthony Bucco (R-Morris) seeking to raise awareness about a debilitating genetic disorder that softens a carrier’s bones and teeth has been approved by the Senate.
SJR-45 dedicates the last week in October as “Hypophosphatasia Awareness Week.” The disorder, known as HPP, inhibits the natural hardening (“mineralization”) process in a person’s bones and teeth beginning at birth, causing bones and teeth to become soft, brittle, and malformed as the child grows.
“HPP affects approximately 1 in 100,000 babies born, and there are no FDA approved treatments for the disorder at this time,” said Bucco. “While relatively rare, it is a physically devastating condition for those it does impact. I’m hoping that by raising awareness of HPP at the state level, we can attract some research dollars and interest to the pursuit of a treatment that will improve the lives of those affected.”
Senator Bucco learned of HPP through a constituent whose son was diagnosed and started an advocacy group to raise awareness of the disorder. For more information, visit www.softbones.org.