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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."
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