Bucco Resolution Establishes “Osteopetrosis Awareness Week” in May of Each Year
The New Jersey Senate has passed a resolution sponsored by Senator Anthony Bucco (R-Morris) designating the last full week May of each year as “Osteopetrosis Awareness Week” and the last Saturday of May of each year as “Osteopetrosis Awareness Day.”
Osteopetrosis is a rare congenital bone disorder that causes bones to be overly dense and prone to fractures. Osteopetrosis, also known as “stone bone,” affects people of all ages. Infants who are born with this disorder face a severely shortened life expectancy.
Sen. Anthony Bucco’s resolution designates the last full week of May as “Osteopetrosis Awareness Week” to raise awareness and spur an increase in research and treatment options for the rare bone disorder. (©iStock)
“Osteopetrosis affects less than 1,300 people in the United States and like many rare disorders, there are very few treatment options available. As a father and grandfather, I cannot imagine how devastating this must be for a parent of a newborn who may not live long enough to find a successful treatment,” Senator Bucco said.
“I am hopeful that this resolution will spur medical researchers to work harder to find a cure, and encourage all New Jersey residents to support those who cope with this disease every day.”
Osteopetrosis is caused by an imbalance in the bone remodeling process that allows for new bone to be created but not for old bone to be removed. Symptoms include fractures, frequent infections, blindness, deafness and stroke. The disorder ranges from a mild, symptom free adult form to a severe, life threatening infant form known as Malignant Infant Ostepetrosis (MIOP.)
Currently, the FDA has only approved one drug to delay the progression of the disease. For infants born with MIOP, the only way to prolong survival is a bone marrow transplant. However, a matching donor is only available for 50 percent of those affected and even then, only 45 percent of transplants are successful.
Senator Bucco’s resolution, SJR-43, aims to raise awareness, encourage support for patients, families, and caregivers affected by this disorder; and to promote further research into this disorder and its treatment. The resolution was drafted with the support and guidance of The OsteoPETrosis Society, which is based in Asbury, New Jersey.
Now that the Senate has approved the resolution, the first ever “Osteopetrosis Awareness Day” in New Jersey will be observed on Saturday, May 27, 2017.
“The members of the OsteoPETrosis Society have worked tirelessly to provide education and support for patients, caregivers and medical professionals,” Senator Bucco added. “I am grateful for their efforts and guidance in drafting this resolution and I will continue to advocate alongside them for better treatment and care for all those suffering from this disease.”
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