Bill Text: NJ SJR24 | 2020-2021 | Regular Session | Introduced


Bill Title: Designates September 7 through 13 of each year as "Duchenne Muscular Dystrophy Awareness Week" in New Jersey.

Spectrum: Partisan Bill (Republican 1-0)

Status: (Introduced) 2020-01-27 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [SJR24 Detail]

Download: New_Jersey-2020-SJR24-Introduced.html

SENATE JOINT RESOLUTION

No. 24

STATE OF NEW JERSEY

219th LEGISLATURE

 

INTRODUCED JANUARY 27, 2020

 


 

Sponsored by:

Senator  SAMUEL D. THOMPSON

District 12 (Burlington, Middlesex, Monmouth and Ocean)

 

 

 

 

SYNOPSIS

     Designates September 7 through 13 of each year as "Duchenne Muscular Dystrophy Awareness Week" in New Jersey.

 

CURRENT VERSION OF TEXT

     As introduced.

  


A Joint Resolution permanently designating September 7 through 13 as "Duchenne Muscular Dystrophy Awareness Week" in New Jersey.

 

Whereas, Duchenne muscular dystrophy is a genetic disorder caused by a mutation in the gene that encodes for dystrophin, a protein that helps maintain the structure of muscle cells; and

Whereas, Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in 3,500 boys globally; and

Whereas, Duchenne muscular dystrophy is characterized by progressive muscle degeneration and weakness, with symptoms often beginning as early as three years of age; and

Whereas, This muscle weakness normally begins to affect critical organs like the heart and lungs by early teenage years; and

Whereas, Until recently, boys with Duchenne muscular dystrophy often did not survive into adulthood, but advances in cardiac and respiratory care are allowing many to live into their 30s or later; and

Whereas, The mutated gene that causes Duchenne muscular dystrophy is located on the X chromosome, and thus can be carried by females, who normally do not show any symptoms of the disease, but can pass it along to their children; and

Whereas, Genetic counseling is advised for people with a family history of this disease, and genetic testing can detect the gene that causes Duchenne muscular dystrophy in approximately 95 percent of cases; and

Whereas, Scientists and donors around the world are conducting intense research to develop new treatments for Duchenne muscular dystrophy, including research into new drug treatments, gene therapy, muscle regeneration, stem cell transplantation, and more; and

Whereas, A worldwide coalition of Duchenne patient and parent organizations, United Parent Projects Muscular Dystrophy, recognizes World Duchenne Day on September 7 of each year in countries all over the world; and

Whereas, A New Jersey charity focused on Duchenne muscular dystrophy, JAR of Hope, was founded after Jim and Karen Raffone learned of their son's diagnosis on September 13, 2013; and

Whereas, The State of New Jersey can support these efforts to raise awareness of Duchenne Muscular Dystrophy and to raise funding to support research into treatments and an eventual cure for the disease by annually honoring and joining in their work; now, therefore,

 

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

     1.    The week beginning September 7 and ending September 13 of each year is designated as "Duchenne Muscular Dystrophy Awareness Week" to raise public awareness of Duchenne Muscular Dystrophy, to educate health care professionals and parents about the condition, help improve early diagnosis and treatment for the disease, to improve the quality of life of all people affected by Duchenne Muscular Dystrophy, and to encourage further research into treatments for the disease.

 

     2.    The Governor is respectfully requested to issue a proclamation recognizing "Duchenne Muscular Dystrophy Awareness Week" in New Jersey, and calling 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 joint resolution designates September 7 through 13 of each year as "Duchenne Muscular Dystrophy Awareness Week," to raise public awareness of Duchenne Muscular Dystrophy, to educate health care professionals and parents about the condition, help improve early diagnosis and treatment for the disease, to improve the quality of life of all people affected by Duchenne Muscular Dystrophy, and to encourage further research into treatments for the disease.  This week includes two significant dates: World Duchenne Day on September 7, and the date on which Jamesy Raffone was diagnosed with Duchenne muscular dystrophy, leading his parents to found JAR of Hope, a New Jersey charity focused on Duchenne muscular dystrophy.

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