Bill Text: NJ SJR49 | 2018-2019 | Regular Session | Introduced


Bill Title: Designates last full week in October of each year as "Hypophosphatasia Awareness Week."

Spectrum: Partisan Bill (Republican 1-0)

Status: (Introduced) 2018-02-05 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [SJR49 Detail]

Download: New_Jersey-2018-SJR49-Introduced.html

SENATE JOINT RESOLUTION

No. 49

STATE OF NEW JERSEY

218th LEGISLATURE

 

INTRODUCED FEBRUARY 5, 2018

 


 

Sponsored by:

Senator  ANTHONY R. BUCCO

District 25 (Morris and Somerset)

 

 

 

 

SYNOPSIS

     Designates last full week in October of each year as "Hypophosphatasia Awareness Week."

 

CURRENT VERSION OF TEXT

     As introduced.

  


A Joint Resolution designating the last full week in October of each year as "Hypophosphatasia Awareness Week."

 

Whereas, Hypophosphatasia is a rare inherited metabolic disorder that affects the healthy development of bones and teeth by disrupting the body's production of a critical bone-mineralization enzyme, resulting in the weakening and softening of bones and teeth; and

Whereas, Severe hypophosphatasia affects an estimated one in 100,000 infants, with a 50 percent mortality rate during the first six months following birth, and with the most severe cases resulting in stillbirth; and

Whereas, Milder forms of hypophosphatasia can also appear in later childhood or adulthood; and

Whereas, Hypophosphatasia causes painful and potentially life-threatening symptoms such as: skeletal abnormalities, soft skull bones or abnormal skull shape, respiratory problems, high levels of calcium in the blood, poor appetite and weight gain, recurrent vomiting, kidney problems, early loss of primary (baby) teeth, loss of secondary (adult) teeth, abnormally shaped chest, shortened or bowed limbs, enlarged wrist and ankle joints, recurrent foot and thigh bone fractures, and chronic pain and inflammation; and

Whereas, The National Institutes of Health has categorized hypophosphatasia as a "rare disease," which is any disease or condition that affects fewer than 200,000 persons in the United States; and

Whereas, As with many other rare diseases, hypophosphatasia currently has no cure or proven medical therapy, although treatment approaches, such as enzyme replacement therapy and bone marrow transplantation therapy, are currently being studied; and

Whereas, Research related to rare diseases such as hypophosphatasia is often limited because such small patient populations offer fewer market incentives for developing effective drugs and medical treatments; and

Whereas, Besides struggling with serious medical problems and inadequate or no treatment, patients with hypophosphatasia may be frequently undiagnosed or misdiagnosed as having rickets, osteoporosis, periodontal disease, or other conditions; and

Whereas, Organizations across the world observe "Bone and Joint National Awareness Week" every October to educate patients, families, and health care providers about the many bone and joint disorders, to encourage support for patients and families who are living with these disorders, and to spotlight innovations regarding prevention, management, and treatment; and

Whereas, It is appropriate that New Jersey support the efforts made to combat hypophosphatasia by recognizing the last full week in October as "Hypophosphatasia Awareness Week" to raise awareness of this rare bone disease, to call attention to the challenges associated with diagnosing and treating this disease, to encourage support for patients, families, and caregivers affected by the disease, and to promote further research into the disease and its treatment; now, therefore,

 

     Be It Resolved by the Senate and General Assembly of the State of New Jersey:

 

     1.    The last full week in October of each year shall be designated as "Hypophosphatasia Awareness Week" to raise public awareness of hypophosphatasia and to encourage support for patients, families, and caregivers affected by this rare bone disease.

 

     2.    The Governor is requested to annually issue a proclamation recognizing the last full week in October as "Hypophosphatasia Awareness Week" in New Jersey and to call upon public officials and the citizens of this State to observe the week with appropriate activities and programs.

 

     3.    This joint resolution shall take effect immediately.

 

 

STATEMENT

 

     This resolution would declare the last full week in October as "Hypophosphatasia Awareness Week" in New Jersey to raise public awareness of hypophosphatasia and to encourage support for patients, families, and caregivers affected by this rare bone disease.

     Hypophosphatasia is an inherited disorder that affects the healthy development of bones and teeth. Hypophosphatasia's most severe forms affect an estimated one in 100,000 newborns.  However, the disease and its milder forms may appear in later childhood or adulthood. Patients with this disease may experience painful and potentially life-threatening symptoms, including skeletal abnormalities, respiratory and kidney problems, loss of teeth, recurrent bone fractures, and chronic pain.

     Hypophosphatasia, like other rare diseases, currently has no cure or proven medical therapy. Patients with hypophosphatasia may be frequently misdiagnosed or undiagnosed and may need to cope with inadequate or no treatment, due to limited research.  Raising public awareness of hypophosphatasia may help patients, families, and caregivers obtain better information about the disease and make better decisions about care.  Raising public awareness may also help promote further research into the disease and its treatment.

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