Senator Leibell visits Columbia's ALS
Research Center

New York State Senator Vincent L. Leibell visited The Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University on July 23rd, 2002, to meet with Dr. Timothy A. Pedley, Chairman of the Department of Neurology, Dr. Hiroshi Mitsumoto, Medical Director of the ALS Center, and Dr. Serge Przedborski, Scientific Director of the ALS Center. Senator Liebell is a Republican who represents the 37th Senatorial District, serving Putnam and parts of Dutchess and Westchester counties. The Senator was invited to visit the ALS Center by Mr. William Monti, a member of our ALS Advisory Committee whose son Billy died of ALS two years ago.

Billy's story touched the Senator deeply. As a result, he wanted to learn more about the disease. Like most individuals who are diagnosed with ALS, Billy was in the prime of life. After graduating from Manhattan College summa cum laude with a Bachelor of Science degree in accounting, Billy went to work for mega-accounting firm KPMG, and then moved on to Wel-Built, a financial firm in Stanford, CT. Later, shortly after Billy and his wife Francine moved to North Carolina, the first symptoms and signs of ALS appeared.

Determined to find the best ALS center in the country, Mr. and Mrs. Monti contacted Dr. Lewis P. Rowland, then Director of Columbia's ALS Center. Shortly after receiving a confirmatory diagnosis from Dr. Rowland, Billy and his wife decided to move back to the New York area so that he could receive care at Columbia.

The Senator was surprised to learn that ALS is not rare. "The incidence of ALS is as high as multiple sclerosis. However, the prevalence of ALS is much lower than that of MS. ALS often affects individuals who are in late adulthood and the disease leaves the patient debilitated, rapidly in most cases, and thus there is hardly enough time and enough affected people to be noticed in the public eye, but this has been changing," says Dr. Mitsumoto.

In order for a cure to be found, there must be more public and political awareness of the disease, so that centers, like The Eleanor and Lou Gehrig MDA/ALS Research Center, can receive increased research support, not only from traditional sponsors like NIH, but from foundations and private individuals as well. "Philanthropy is critical in providing money that allows us to move quickly into new areas of research and to obtain the preliminary data necessary to apply for NIH funding. In addition, private gifts allow us to provide services that are essential for patient care but unfortunately are not covered by most insurance providers," said Dr. Pedley.

The number of patients seen each month at Columbia's ALS Center impressed Senator Leibell. As one of only 28 such centers in the country, the Columbia's ALS Center provides comprehensive care that includes a team of 6-8 health care professionals, in addition to the neurologist, depending on individual needs. Team clinicians include advanced practice nurses, nutritionists, physical and occupational therapists, speech pathologists, orthopedic specialists, and physiatrists.

During the Senator's visit, Dr. Przedborski discussed the active ALS research program at Columbia. Dr. Przedborski pointed out that because ALS cannot be diagnosed until characteristic symptoms and signs appear, a large number of the motor neurons are already lost by that time. At the present time, the most promising interventions based on current research are twofold: 1) to stop further cell loss; and 2) to replace lost brain cells with new cells, such as those likely to be derived from embryonic stem cells. Both of these avenues are under intense investigation at Columbia.

In another major step, scientist Dr. Thomas Jessell and his team of researchers at Columbia have recently demonstrated, for the first time, that it is possible to make mature motor neurons from embryonic stem cells.

Billy Monti lived with ALS for almost five years before he passed away. During that time, he and his wife had two children, Ridley and Kayann, who are now 2 and 4 years of age. Although not in time for Billy, there is increasing hope for others who have or will develop the disease.

As the day came to a close, Senator Leibell remarked, "This was one of the best presentations I have seen in twenty years."