SJR17

A Joint Resolution designating September of each year as “Duchenne Muscular Dystrophy Awareness Month” in New Jersey.

Whereas, Duchenne muscular dystrophy (DMD) is a muscular degenerative disease caused by genetic mutations on the X chromosome, which affects approximately 1 out of every 3,500 male infants; and

Whereas, Individuals with DMD experience progressive loss of muscle tissue and function, which may cause paralysis and cardiopulmonary complications, including difficulty breathing, irregular heart rhythms, and heart failure; and

Whereas, Symptoms of DMD generally present between ages two to three and rapidly progress, with the majority of individuals with DMD requiring wheelchair assistance between the ages of 10 and 12 and a breathing ventilator by age 20; and

Whereas, DMD is a fatal disease with an average life expectancy of 25 years; and

Whereas, While there is no cure for DMD, non-profit organizations across the country and in New Jersey, including JAR of Hope and Ryan’s Quest, are dedicated to raising awareness of DMD, advocating for improved quality of care and access to treatment, and funding research to identify novel treatments and a cure for DMD; and

Whereas, Historically, only steroids were effective in slowing the progression of DMD; and

Whereas, Recent advancements in medical research, however, have identified additional treatments, including stem cell-based therapies and gene therapy, that may be effective in managing the symptoms and progression of DMD; and

Whereas, Genetic testing can diagnose individuals with DMD by revealing the specific gene mutation, and identify appropriate treatment options based on the individual’s unique genetic profile; and

Whereas, Early diagnosis of DMD and proactive participation in physical rehabilitation can help keep muscles and joints pliable, which can help prevent joint pain or stiffness and enable children with DMD to maintain their mobility; and

Whereas, Advocacy efforts to improve patients’ access to treatment are critical as research indicates that optimal care, including improved treatment for cardiopulmonary issues, may help extend the life expectancy for individuals with DMD by approximately 15 years; and

Whereas, In addition to improving patient outcomes, increasing awareness of DMD may help promote empathy and understanding, foster a sense of community, strengthen advocacy efforts, and encourage social and emotional support for the young people and families affected by DMD; and

Whereas, It is fitting and proper for the State of New Jersey to support and encourage public awareness campaigns and advocacy efforts by designating September of each year as “Duchenne Muscular Dystrophy Awareness Month” in New Jersey; now, therefore,

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

1. September of each year is designated as “Duchenne Muscular Dystrophy Awareness Month” in New Jersey.

2. The Governor is requested to issue a proclamation annually to recognize September of each year as “Duchenne Muscular Dystrophy Awareness Month” and call upon relevant State agencies, organizations, and citizens of the State to observe the month with appropriate awareness activities and programs.

3. This joint resolution shall take effect immediately.

STATEMENT

This bill designates September of each year as “Duchenne Muscular Dystrophy Awareness Month” in New Jersey.

Duchenne muscular dystrophy (DMD) is a muscular degenerative disease that results in the progressive loss of muscle tissue and function. DMD is caused by genetic mutations on the X chromosome, which affects approximately 1 out of every 3,500 male infants.

Symptoms of DMD generally present between ages two and three and rapidly progress, with many individuals with DMD requiring wheelchair assistance between ages 10 and 12 and a breathing ventilator by age 20. Individuals with DMD may also experience paralysis and cardiopulmonary complications, including difficulty breathing or heart failure. DMD is a fatal disease with an average life expectancy of 25 years.

While there is no cure for DMD, non-profit organizations across the country and in New Jersey are dedicated to raising awareness of DMD, advocating for improved care and access to treatment, and funding research to cure this devastating disease. Efforts to improve patients’ access to treatment are critical as research indicates that optimal care can help to significantly increase the life expectancy for individuals with DMD. In addition, increasing awareness of DMD may help promote empathy and understanding, foster a sense of community, strengthen advocacy efforts, and encourage social and emotional support for the young people and families affected by DMD.

To join and support ongoing public awareness and advocacy efforts, September of each year is designated as “Duchenne Muscular Dystrophy Awareness Month” in New Jersey. The Governor is requested to issue a proclamation annually to recognize September of each year as “Duchenne Muscular Dystrophy Awareness Month” and call upon relevant State agencies, organizations, and citizens of the State to observe the month with appropriate awareness activities and programs.