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Dr. Bradley's Corner (Continued from p. 1)
from anyone able to help.
At the 3rd Support Group Meeting,
we had a wonderful visit by Canine
Companions for Independence. To see
how well these dogs are trained and to
see what they can do for patients with
disabilities such as ALS is simply amazing.
(See picture below.)
The first clinic was on March 21,
1998, but even before that we were
launched into orbit by two important
events. The first was the opening of the
Kessenich Family MDA ALS Center on
March 4, 1998. The second was the
launching of the website:
(www.miami-als.org).
This site was designed and set up by
Todd Ryan, whose father had ALS.
Websites are organic structures, and we
are always looking for ways to improve
it, things that need correction, and for
new materials to go onto it. Any suggestions that you have will be welcome, and
please send them to Ginna Gonzalez,
R.N., the Nurse Director of the
Kessenich Center.
Even though we are still in the start
up phase of the Kessenich Center and
our multi-disciplinary team approach to
the care of ALS, we do not feel that it is
too early to begin developing out-reach
progranis and innovations. As is fitting,
since Mr. Kessenich is a resident of West
Palm Beach, we are developing the first
satellite of ALS specialists in Palm
Beach County. We are also fortunate to
have developed liaison with the already
existing excellent multi-disciplinary
clinic directed by Dr. Terry Petrella in
Sarasota, Florida.
The Chairman of the Advisory
Board of the Kessenich Center is
Professor Ellen Baer, Professor Emeritus
of Nursing of the University of
Pennsylvania. With her expert advice,
and the gracious assistance of Dean
Diane Horner, Dean of the University of
Miami School of Nursing, we are in the
planning stage of setting up a number of
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nursing programs in the Kessenich
Center. We expect that these programs
will including nursing care, a home visit
program, student teaching, and several
aspects of clinical research development.
I look forward to bringing more details
of these developments in our future
newsletters.
The Kessenich Center is the center
piece of our ALS Program in the
Department of Neurology of the
University of Miami School of
Medicine. Two additional parts of our
program are however of great importance
to our hopes of being able to find
the cause aDd cure of this terrible disease.
The first is our Therapeutic Trials
Program under the direction of Julie
Steele. The second is the University of
Miami ALS Research Foundation, the
goals of which are to raise funds to support
our basic and clinical research program
to find the cause of the disease. The
President of the ALS Research
Foundation is Jose A. Perez who himself
fights the effects of the disease every
day, and the Chairman of the Advisory
Board is Jerry Abraham, who lost his
mother to ALS.
Development and growth are essential
if we are going to be able to achieve
the goals that we have set ourselves for
the Kessenich Center and our overall
ALS Clinical and Research Program. We
are at present being strangled by our own
success. We have rapidly outgrown the
1,000 sq. ft. of space in which we currently
house our clinical trials operation,
the Kessenich Center Offices, and some
of our ALS patient care. We desperately
need a building into which we can put
the whole of our ALS Clinical Team,
where we can bring our patients for care,
and where we can house an equipment
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demonstration area. It looks as though
we will need to purchase and renovate an
existing building, and will need about $3
million to achieve this. Renee Stewart is
the Program Coordinator and
Development Officer for the whole program.
With Renee's help we shall be
launching a Campaign for the Kessenich
Center and the ALS Program in the
University of Miami School of
Medicine.
There have been two major events
to raise funds to support ALS Research
and patients, both of which were brilliant
successes. One was the Second Annual
University of Miami ALS Research
Foundation Golf Tournament held on
January 31, 1998, which raised over
$100,000 to support our research program.
The second was the Iliva Romano
Memorial Gala held at the home of Julio
Iglesias on Miami Beach on March 13,
1998. This raised almost $300,000 to
help in the care and expenses of patients
and their families.
For all of us who deal with ALS, it
is a continual battle of joy and sadness.
The joy is seeing how patients and their
families overcome adversity and continue
to have a good life despite the problems
of the disease. Unfortunately, there
is also sadness, and we have lost a number
of good friends in the last year.
Others, including Mr. Kessenich himself,
are having increasing, problems as the
disease progresses. These human
tragedies face us every day with a need
to redouble our efforts to treat patients
more effectively, and to find the cause
and cure of this disease.
Walter G. Bradley, D.M., F.R.C.P.
Medical Director, The Kessenich Family
MDA ALS Center
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Multidisciplinary team members.
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