HOUSE OF REPRESENTATIVES

H.R. NO.

68

TWENTY-SEVENTH LEGISLATURE, 2014

H.D. 1

STATE OF HAWAII

 

 

 

 

 

HOUSE RESOLUTION

 

 

URGING COMMUNITY AWARENESS OF AMYOTROPHIC LATERAL SCLEROSIS, ALSO KNOWN AS ALS OR LOU GEHRIG'S DISEASE, AND COMMUNITY SUPPORT FOR FINDING A CURE FOR ALS AND THE PROVISION OF ASSISTANCE TO ALS PATIENTS.

 

 

 

     WHEREAS, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive, fatal neurodegenerative disease that affects nerve cells in the brain and the spinal cord; and

 

     WHEREAS, early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing, or breathing; and

 

     WHEREAS, the progressive degeneration of the motor neurons in an ALS patient eventually leads to death; and

 

     WHEREAS, ALS does not typically affect a patient's mental capacity, and thus, the patient usually remains alert and aware of the loss of motor functions and the inevitable outcome of deterioration and death; and

 

     WHEREAS, on average, ALS patients survive only two to five years after the ALS diagnosis is made; and

 

     WHEREAS, ALS has no known cause, means of prevention, or cure; and

 

     WHEREAS, research indicates that military veterans are about twice as likely to develop ALS as compared to those who have not served in the military; and

 

     WHEREAS, the United States Department of Veterans Affairs implemented regulations to establish a presumption of service connection for ALS, thereby presuming that the development of ALS was incurred or aggravated by a veteran's service in the military; and
     WHEREAS, the National ALS Registry, which is primarily administered by the federal Agency for Toxic Substances and Disease Registry, which is in turn a sister agency of the Centers for Disease Control and Prevention, may be the single largest ALS research project ever created; and

 

     WHEREAS, persons living with ALS can also add their information to the National ALS Registry to help scientists learn more about the disease; and

 

     WHEREAS, due to his affliction with ALS, Lou Gehrig, the pride of the Yankees, bid farewell to baseball in a famous speech given at Yankee Stadium on July 4, 1939; and

 

     WHEREAS, 2014 is the 75th Anniversary of that speech, and this anniversary will be observed during the National ALS Association's advocacy gathering in May 2014, in Washington, D.C., with generous support from Major and Minor League Baseball across the country; and

 

     WHEREAS, Hawaii has joined with other groups nationally to increase public awareness of:

 

(1)  The circumstances and experiences which ALS patients face in combatting this fatal disease;

 

(2)  The terrible impact ALS has not only on ALS patients but on their families; and

 

(3)  The research being done to treat and eradicate this rapidly progressive and fatal disease; now, therefore,

 

     BE IT RESOLVED by the House of Representatives of the Twenty-seventh Legislature of the State of Hawaii, Regular Session of 2014, that this body hereby urges community support for, and awareness in, finding a cure for ALS and the provision of assistance to ALS patients; and

 

     BE IT FURTHER RESOLVED that the community is further urged to support the "Walk to Defeat ALS," scheduled for Saturday, September 6, 2014, at 11:00 a.m., at Kapiolani Regional Park in Honolulu, Hawaii, as a joint community awareness event; and

 

     BE IT FURTHER RESOLVED that the ALS Ohana of Hawaii and the ALS Association Golden West Chapter in Agoura Hills, California, be recognized for their joint efforts to achieve the goal of a Hawaii ALS Registry; and

 

     BE IT FURTHER RESOLVED that certified copies of this Resolution be transmitted to members of Hawaii's delegation to Congress, the U.S. Department of Veterans Affairs, the Governor of the State of Hawaii, the State Office of Veterans Services, the National ALS Association, the ALS Golden West Chapter, the John A. Burns School of Medicine, the Hawaii Medical Association, the ALS Ohana of Hawaii, the Muscular Dystrophy Association of Hawaii, and the Hawaii Association of Health Plans, which is requested to provide copies of this Resolution to its members.

 

 

 

Report Title: 

Community Support and Awareness; ALS; Lou Gehrig's Disease; Finding a Cure