Relates to ALS (Amyotrophic Lateral Sclerosis) research and education

Section 2. Amends the tax law by adding a new section to enable personal taxpayers to make a contribution to the ALS research and education fund. This contribution can be made in any whole dollar amount, and shall not reduce the amount of the state tax owed by the taxpayer. In addition, this section mandates that all revenues collected be credited to ALS research and education fund, as enumerated in the state finance law.

Section 3. Amends the state finance law by establishing the "New York State ALS research and education fund" in the joint custody of the commissioner of taxation and finance and the controller. This section also provides that all moneys of the fund shall be expended to provide grants to the Greater New York ALS Association and the ALS Association Upstate New York Chapter, not-for-profit corporations incorporated for the purpose of advancing and financing ALS research and education projects. This section further requires the Comptroller to report by February first of each year on the aggregate collections-in the fund by source. Also, the Greater New York ALS Association and ALS Association Upstate New York Chapter is required to publish an annual report on or before February first which details the issuance of grants, and financial statements as a condition of receiving grants from the "New York State. ALS research and education fund." Financial statements included in this report must be audited by a nationally recognized accounting firm.

Section 4. Effective date.

Justification

The facts and statistics relating to ALS are startling:

*Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's Disease, is a progressive rieurodegenerative disease that affects motor neurons in the brain and the spinal cord. On average, one person with ALS die within two to five years of diagnosis.

*In the one hundred fifty years since ALS was identified as a disease, there is still no known cause, prevention, treatment or cure. Genetics, toxic agents and stress are all suspected as possible causes of the disease. However, further research is needed to determine whether any or all of these factors are the cause of ALS and related disorders. It is estimated that there are more than thirty thousand Americans who have ALS and related disorders at any given time. Based on united states' population studies, a little more than five thousand six hundred people in the united States are diagnosed with ALS each year. Approximately every ninety minutes, someone is diagnosed with ALS and every ninety minutes, someone dies from ALS.

*Studies supported by the Department of veterans Affairs, Harvard university and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig's Disease as those who have not served in the military. These findings were most recently confirmed by a September 2009 study funded by the VA and the National Institutes of Health. without funding for research projects, opportunities to discover and deliver a treatment to veterans will leave them - and all people living with the disease with no effective treatment option. We need to fund vital research to ensure that our nation continues to fight for our veterans just as they fought for us.

*Research has shown that coordinated and comprehensive community-based clinical care provided within a multidisciplinary treatment program can marginally extend life and improve the quality of life for persons with ALS. The surge in the numbers of those persons affected by ALS, including family caregivers, will place a severe strain on the state's already challenged health, social services, geriatrics and other service delivery systems.

The addition of a check-off box on the Corporate and Personal Income Tax forms will provide a convenient way for people to contribute to ALS research and education.

Legislative history

2013-14: S2004-C/A1169-C - Investigations & Gov't Operations/3rd Reading Calendar

2011-12: S5393-B/A7840-B - Finance Committee/Passed Assembly

Fiscal implications

None to state.

Effective date

This act shall take effect immediately.