ALS registry becomes a reality
By Richard Holwitt • November 10, 2008


In July, I wrote a guest viewpoint regarding the Federal ALS Registry Act which was placed on permanent hold by Sen. Tom Coburn of Oklahoma. I am delighted to report to you that within the last month, the Senate and House of Representatives overwhelmingly passed the ALS Registry Act, and it was signed by President Bush.

This effort took almost five years of work by ALS advocacy groups, researchers, clinicians, private citizens, and those, like me, who have been stricken with this horrific disease. ALS (Amyotrophic lateral sclerosis), more commonly known as Lou Gehrig's disease, is a neuromuscular degenerative disease that is invariably fatal and generally within 2 to 5 years of diagnosis causes death by suffocation. Between 5 and 10 thousand Americans receive this diagnosis yearly and there are approximately 30,000 of us living with it at any given time.
This registry represents a huge victory for those dedicated researchers and clinicians seeking to discover the causative factors and, ultimately, a cure for this disease which has remained untreatable since its discovery in 1859. There has been very little progress in treatment of ALS since Lou Gehrig was carried off the field of Yankee Stadium on July 4, 1939.

This legislation authorizes federal funding ($25 million for fiscal year 2008, and $16 million for each of the fiscal years 2009 through 2012) to establish a national registry. This bill directs the Centers for Disease Control and Prevention to:

Develop a system to collect data on ALS and other motor neuron disorders.

Establish a national registry for the compilation and storage of such data.

Establish an Advisory Committee on the National ALS Registry to report and make recommendations to the Secretary of Health and Human Services.

Coordinate with existing federal, state and local registries.

Award grants to nonprofits to assist in the collection and reporting of data.

Why, you may ask is this Registry important? The answer is that quite conceivably within my lifetime, it might not be. However, researchers having access to data which would include age, location, and anatomical information regarding onset, ethnicity, environmental conditions, rates of progression, and other pertinent details contained within this database may yet produce a "Eureka" moment. It would also help local practicing neurologists identify other cases within their geographical practice area and thus, perhaps, assist in identifying clusters of ALS.

Clearly more research and research dollars must be committed to this and other orphan diseases, but due to the profit orientation of the major drug companies, it is unlikely to come from them. This step, therefore, by the government provides hope and encouragement to those of us fighting a daily battle against ALS, and we pray that through the efforts of those working tirelessly in the field of stem cell research and gene therapy that a cure or, at least, the means to halt progression of the disease, is just around the corner.

I thank Sens. Clinton and Schumer, my Congressman Michael Arcuri, and all of the other senators and representatives who overwhelmingly supported this registration. Given the financial turmoil of the times, it is with deep respect and thanks to those legislators who have placed compassion over politics and intellect over pork to pass this legislation.

I also commend the president for his timely action in signing this bill into law. And I respectfully ask readers' support for our local MDA-ALS chapter.

Richard Holwitt is a Binghamton resident.

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