Domenici supports ALS Registry
Ailing Senator shows sympathy for Lou Gehrig's research


By Barbara Armijo 05/22/2008
"Moving, powerful and emotional," is how members of the ALS New Mexico described a recent meeting with Sen. Pete Domenici in Washington, D.C.

David Meister, who heads advocacy for the ALS of New Mexico, said the meeting on May 13 resulted in the group securing Sen. Domenici's much-needed support of the ALS Registry Act, which would establish a national patient registry of people with Lou Gehrig's Disease, or amyotrophic lateral sclerosis.

Domenici agreed to co-sponsor the legislation, and assigned a legislative assistant to compile information on the level of ALS research carried out by the National Institutes of Health.

The bill is on the Senate calendar, which means it could be taken up by the full Senate at any time, according to Domenici spokesman Chris Gallegos.

"Having Sen. Domenici co-sponsor this bill is absolutely vital," Meister said. "We have asked him to sponsor it in the past and he has not, for whatever reason, been able to do it. But this year, after spending some very emotional moments with us discussing ALS and his disease as well, he gave us his full support."

Domenici has been diagnosed with a degenerative brain disease and announced last year he will not seek a seventh term in Congress. His retirement this year will represent the end of an era for both the Senate and New Mexico where the Republican has been an institution for 35 years.

The legislation would establish a registry, administered by the Centers for Disease Control and Prevention, to collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941.

Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years.

More recently, ALS is striking young people and many of the nation's military veterans, Meister said.

"Recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population," he said. "A national registry will enable us to learn why our veterans are at greater risk of ALS. We need to have more information in order to find the cure."

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Domenici, 75, has frontotemporal lobar degeneration. The disease is characterized by personality change and impaired social conduct initially and throughout the disease course. Patients may also have emotional blunting and loss of insight. Other common features are disinhibition, neglect of personal hygiene, mental rigidity, perseverative behaviors, voracious appetite and hyperorality.

"The progress of this disease is apparently erratic and unpredictable," Domenici said when announcing his retirement last year in Albuquerque.

When speaking to Meister and others recently about the ALS registry, Domenici said that his disease also is without a cure. Meister, who also met with Domenici last year, said he noticed a change in the senator's mannerisms in that time.

"He was very gracious to us and he wanted to know about ALS and what it does, how it impacts people," Meister said. "Then he told us a little about his disease and it was a very tender and emotional moment for all of us."

“ALS is a disease that has devastated too many lives," Domenici said in an e-mail. "I hope this legislation and other advances in the understanding of the human neurologic system will lead to better treatments and eventually a cure for ALS and other diseases. This hope is why I’ve been an advocate for the human genome project, which I believe will have positive impacts for humankind.”

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