Muhammad and Lonnie Ali appeared before a Congressional Subcommittee on
Wednesday, April 23, 1997 to throw their weight behind the Morris K.
Udall Parkinson's Research and Education Act (S. 535). Before a packed
committee room filled with reporters, Parkinson activists, and members of
Congress, the Alis were introduced by Senator John McCain, the lead
sponsor of the Udall bill in the Senate. The committee before whom the
Alis appeared was the appropriations committee that approves funding for
the National Institutes of Health where the funds provided by the Udall
bill will be allocated.
The Alis appeared before the committee as the National Spokespersons for
the National Parkinson Foundation which has provided a leadership role in
seeking approval and passage of this very important legislation to all
persons suffering from Parkinson's disease.
The panel of witnesses supporting Parkinson's research was moderated by
Lawrence S. Hoffheimer, Esq., Washington Counsel to the National
Parkinson Foundation. Emilio Alonso-Mendoza, Esq., Executive Director of
the National Parkinson Foundation, presented testimony on behalf of NPF
in support of the Udall bill.
The Committee members were moved by the testimony and praised the Alis
for their courage and commitment.
The testimony was preceded by a private luncheon, hosted by the National
Parkinson Foundation, for the members of the Appropriations Committee, to
enlighten the committee members about the devastating consequences of
Parkinson's disease and the research opportunities at hand. Speaking on
behalf of NPF were Emilio Alonso-Mendoza, Lawrence S. Hoffheimer, Peter
Morabito, DDS, Chairman of the Capital Chapter of the National Parkinson
Foundation and a member of the National Board of Governors of the
National Parkinson Foundation, Norma Udall, wife of the former
Congressmen who suffers from Parkinson's disease, for whom the bill is
named, and a member of NPF's Board of Governors. Muhammad and Lonnie Ali
were warmly welcomed by the Congress persons.
NPF organized a press conference that morning which included the four
principal sponsors of the Udall Bill, Senators McCain and Wellstone, and
Congressmen Upton and Waxman (Senator Wellstone and Congressman Waxman
are members of the Board of Governors of the National Parkinson
Foundation) and Muhammad Ali. In addition to Mr. Ali, NPF was represented
by Emilio Alonso-Mendoza, Norma Udall, and Lawrence S. Hoffheimer. A
photograph was taken of the four sponsors and Muhammad Ali holding blown
up copies of the Udall Bill. This photo will become the "official" symbol
of our fight to get the Udall Bill enacted into law.
That evening, the Capital Chapter of the National Parkinson Foundation
sponsored a fundraiser tribute to Muhammad Ali at the Mayflower Hotel in
Washington, DC. About 350 persons paid to attend this event which was
Chaired by Congressman Joe McDade, a senior member of the House
Appropriations Committee, who was diagnosed with Parkinson's disease
about a year ago. The special guest was Senator John McCain, principal
Senate sponsor of the Udall bill. The program was moderated by Peter
Morabito, DDS, Chairman of the Capital Chapter of the National Parkinson
Foundation. Larry Hoffheimer, President of the Capital Chapter of the
National Parkinson Foundation, presented awards of "Heartfelt
Appreciation" to Congressman McDade and Senator McCain who spoke to the
guests. Emilio Alonso-Mendoza, welcomed the guests on behalf of the
National Parkinson Foundation, and praised Peter Morabito for his energy
and courage in leading the fight to conquer Parkinson's disease.
Finally, Peter Morabito presented framed autographed copies of the House
and Senate versions of the Udall bill to Muhammad Ali, inviting him to
return to Washington when the Bill is signed into law.
The day ended will all involved believing that victory is at hand!
The Testimony of the Alis, Nathan Slewett, Chairman of the National
Parkinson Foundation, and Emilio Alonso-Mendoza, Executive Director of
the National Parkinson Foundation, follows:
Testimony of Muhammad and Lonnie Ali
before the
House Appropriations Subcommittee
for the
Departments of Labor, Health & Human Services, Education and Related
Agencies
April 23, 1997
Mr. Chairman and members of this committee. My name is Lonnie Ali and I
am accompanied by my husband Muhammad Ali whom I'm sure needs no
introduction. The fact that I am the one speaking to you this morning and
not Muhammad is one of the principal reasons that we are here today.
I am sure all of you know Muhammad suffers from Parkinson's disease, a
progressive neurodegenerative disorder that has robbed him of one of his
most prized functions...his voice, and the ability to speak clearly with
resonance. I believe all of you remember Muhammad's pre-Parkinson days
when he moved millions with his vibrant voice and poetic expression. In
fact, Muhammad was so vocal that he was dubbed the "Louisville Lip"
shortly after joining the professional ranks of boxing.
My experience as a Parkinson caregiver has given me greater
understanding about this disease and how it can devastate not only its
victims, but also family and friends as well. Thanks to Muhammad and the
National Parkinson Foundation, I have had the opportunity to share my
story as a caregiver with hundreds of others in Parkinson support groups.
More importantly, they have had the opportunity to share with me, there
own personal stories of economic and emotional tragedy and hardship this
terrible disease has brought them.
In the course of our travels, I have met hundreds of Parkinson
patients, some worse off than Muhammad and some not as affected. Muhammad
and I have come away from these experiences with the resolve to help in
any way we can to advance the research that will hasten the cure for
Parkinson's disease.
Muhammad and I are committed to participate in fundraisers that focus on
raising funds for medical research and tonight Muhammad is being honored
at such an event in Washington that is being sponsored by the Capital
Chapter of the National Parkinson Foundation chaired by your colleague,
Joe McDade, who also suffers from Parkinson's disease. Our special guest
will be Senator John McCain. I would like to extend a personal invitation
to each of you to join us.
As you will hear from Mr. Nathan Slewett, Chairman of the National
Parkinson Foundation, the money raised goes to support some of the finest
Parkinson's research in the world.
But, I can tell you first hand, more is needed! The resources of the
National Institutes of Health can not be matched by private philanthropy.
NIH, whose appropriations your committee approves, is supporting a large
amount of Parkinson's research.....but not enough considering the
research opportunities currently at hand. I have been advised by some of
the top Parkinson's researchers that a significant infusion of federal
funds allocated to Parkinson's research will surely hasten the cure that
Muhammad and thousands of others could personally benefit from. Please
consider that fact when you markup this years appropriations bill.
Even more importantly, I want to urge that you focus on the Morris K.
Udall Parkinson's Research bill, which authorizes a $100 million for
Parkinson's disease research in the next fiscal year. Muhammad and I are
asking each of you become a cosponsor of this legislation, which was just
reintroduced only two weeks ago; and when it is enacted into law, which
it will be, appropriate the funds that it calls for so that we can rid
ourselves of this devastating illness.
Before I finish my remarks, I would like all of you to know that
Muhammad was unwilling to speak out and help in this fight to conquer
Parkinson's disease until recently when it became apparent that he might
be able to make a difference. I think you will agree he has.
Please consider our request and plea for you help.
Thank you, Mr. Chairman, for providing us the opportunity to appear
before you today.
Testimony of Nathan Slewett
Chairman, National Parkinson Foundation, Inc.
before the
House Appropriations Subcommittee
for the
Departments of Labor, Health & Human Services, Education and Related
Agencies
April 23, 1997
Mr. Chairman and members of this distinguished committee. My name is
Nathan Slewett and I am Chairman of the National Parkinson Foundation,
Inc., which is headquartered in Miami, Florida. It is indeed a pleasure
and honor to appear before you today to share with you my most fondest
dream....which is to find a cure for Parkinson's disease. As you've heard
from Muhammad Ali through his lovely and articulate wife, Lonnie, we are
indeed on the threshold of finding a cure for this terrible disease which
is robbing so many persons of their ability to function and pursue their
daily activities of life.
The National Parkinson Foundation was founded more than forty years ago
in Miami, Florida by one of our Nation's truly great philanthropic
pioneers, Mrs. Jeanne Levey, whose husband had Parkinson's disease. It
mission was and has remained unchanged....to raise medical research funds
from public philanthropy and fund the best Parkinson's research by the
most eminent Parkinson researchers throughout the world; and until the
cause of Parkinson's is found, we are dedicated to improving the quality
of life for both Parkinson patients and their caregivers.
Beginning with a single research center in Miami, the NPF now supports
50 centers in 11 countries. 35 NPF Centers of Excellence are located in
the United States. We spent approximately $5,000,000 this past year on
Parkinson's disease research and plan to spend more this coming year. All
our research is thoroughly peer reviewed by our Scientific Advisory Board
who meet in closed session for two days every year. This board is
composed of some of the most distinguished scientists familiar with
Parkinson's disease and other neurodegenerative disorders.
Let me give you two other examples of ways we identify the best
research. You may recall last year an NIH research team headed up by Dr.
Michael H. Polymeropoulos of the NIH Center for Human Genome Research,
announced the discovery of the site of a gene that is believed to have
caused Parkinson's disease in a large Italian family that had experienced
a high incidence of Parkinson's disease. Because of limited federal
resources, the National Parkinson Foundation meet with Dr. Zach Hall,
Director of the National Institute of Neurological Disorders and Stroke,
and Dr. Polymeropoulos. We advised them that we wanted to hasten their
pursuit of this line of research. The result was that the National
Parkinson Foundation agreed to provide them with $515,000 in grants to
enable them to continue their gene research.
We also met with Dr. Hall, whose institute allocates most of the federal
funding for Parkinson's disease research, who advised us that there were
excellent Parkinson's research applications that would not be funded
because of insufficient funds. We asked Dr. Hall to refer these excellent
research candidates to the National Parkinson Foundation to be considered
for a "bridge grants" pending their refunding in future years. This
assistance will allow these research investigators to continue their good
work.
I have said enough about the good work being conducted by my
organization. What I do want to focus on, however, is the need for
additional federal resources to help in this fight. My scientific
colleagues tell me that with a substantial increase in Parkinson's
research funding from NIH, we indeed will find a cure sooner. They also
advise me that we are on the threshold of brave new discoveries that are
in desperate need of funding NOW.
You, as members of the appropriations committee, have the awesome
responsibility of deciding what areas of medical research get more funds
and what areas get less. I certainly don't envy you in this challenging
task. However, I truly believe the case for a dramatic increase in
Parkinson's disease research funding can and has been made. And I plead
with you to consider it.
Finally, and most importantly, all of you have followed the Morris K.
Udall Parkinson's Research Bill named after your former colleague who
currently suffers severely from this disease. It passed the Senate by
unanimous vote last year and received cosponsorship by more than half of
the House of Representatives. Of course we're in another Congress now and
the process has begun anew. The Udall Bill was reintroduced just two
weeks ago by Congressmen Upton and Waxman, and Senators McCain and
Wellstone, all distinguished colleagues of yours. That bill authorizes
$100 million next year for Parkinson's research up from the currently
budgeted $28 million. I and my associates in the National Parkinson
Foundation are and will continue to work to see this bill's enactment
and, after that, look to this distinguished committee to appropriate the
necessary funds that will truly hasten the cure of this terrible disease.
I would like to reiterate that it is estimated that there are 1 million
people with Parkinson's disease, 1% of the population over age 65 years.
Currently, the federal government spends about $7 billion a year caring
for them --- $7,000 per person. Patients, physicians and caregivers are
universally dissatisfied with what that money buys: hospitalization,
custodial care, institutionalization. It is estimated that for every
Parkinson disease patient there are 10 who will develop the disease if
they live long enough. What good will it do if we conquer cancer and we
banish heart disease and stroke if 10% of our population over 65 years
develop Parkinson disease and another 10% is consigned to caring for
them? If we increase our funding for Parkinson disease from $28 million
to $100 million, that is to say $100 per Parkinson disease patient, I
believe that within 5 years we will abolish the disease.
Mr. Chairman, and members of the Committee, please accept my sincere
appreciation for allowing me to appear before you today. I truly respect
what you are doing and wish you God's speed.
Testimony of Emilio Alonso-Mendoza, Esq.
Chairman, National Parkinson Foundation, Inc.
before the
House Appropriations Subcommittee
for the
Departments of Labor, Health & Human Services, Education and Related
Agencies
April 23, 1997
Mr. Chairman and members of this distinguished committee. My name is
Emilio Alonso-Mendoza, and I am Executive Director of the National
Parkinson Foundation, Inc., which is headquartered in Miami, Florida. It
is indeed a pleasure and honor to appear before you today to share with
you my most fondest dream....which is to find a cure for Parkinson's
disease. As you've heard from Muhammad Ali through his lovely and
articulate wife, Lonnie, we are indeed on the threshold of finding a cure
for this terrible disease which is robbing so many persons of their
ability to function and pursue their daily activities of life.
The National Parkinson Foundation was founded more than forty years ago
in Miami, Florida by one of our Nation's truly great philanthropic
pioneers, Mrs. Jeanne Levey, whose husband had Parkinson's disease. It
mission was and has remained unchanged....to raise medical research funds
from public philanthropy and fund the best Parkinson's research by the
most eminent Parkinson researchers throughout the world; and until the
cause of Parkinson's is found, we are dedicated to improving the quality
of life for both Parkinson patients and their caregivers.
Beginning with a single research center in Miami, the NPF now supports
50 centers in 11 countries. 35 NPF Centers of Excellence are located in
the United States. We spent approximately $5,000,000 this past year on
Parkinson's disease research and plan to spend more this coming year. All
our research is thoroughly peer reviewed by our Scientific Advisory Board
who meet in closed session for two days every year. This board is
composed of some of the most distinguished scientists familiar with
Parkinson's disease and other neurodegenerative disorders.
Let me give you two other examples of ways we identify the best
research. You may recall last year an NIH research team headed up by Dr.
Michael H. Polymeropoulos of the NIH Center for Human Genome Research,
announced the discovery of the site of a gene that is believed to have
caused Parkinson's disease in a large Italian family that had experienced
a high incidence of Parkinson's disease. Because of limited federal
resources, the National Parkinson Foundation meet with Dr. Zach Hall,
Director of the National Institute of Neurological Disorders and Stroke,
and Dr. Polymeropoulos. We advised them that we wanted to hasten their
pursuit of this line of research. The result was that the National
Parkinson Foundation agreed to provide them with $515,000 in grants to
enable them to continue their gene research.
We also met with Dr. Hall, whose institute allocates most of the federal
funding for Parkinson's disease research, who advised us that there were
excellent Parkinson's research applications that would not be funded
because of insufficient funds. We asked Dr. Hall to refer these excellent
research candidates to the National Parkinson Foundation to be considered
for a "bridge grants" pending their refunding in future years. This
assistance will allow these research investigators to continue their good
work.
I have said enough about the good work being conducted by my
organization. What I do want to focus on, however, is the need for
additional federal resources to help in this fight. My scientific
colleagues tell me that with a substantial increase in Parkinson's
research funding from NIH, we indeed will find a cure sooner. They also
advise me that we are on the threshold of brave new discoveries that are
in desperate need of funding NOW.
You, as members of the appropriations committee, have the awesome
responsibility of deciding what areas of medical research get more funds
and what areas get less. I certainly don't envy you in this challenging
task. However, I truly believe the case for a dramatic increase in
Parkinson's disease research funding can and has been made. And I plead
with you to consider it.
Finally, and most importantly, all of you have followed the Morris K.
Udall Parkinson's Research Bill named after your former colleague who
currently suffers severely from this disease. It passed the Senate by
unanimous vote last year and received cosponsorship by more than half of
the House of Representatives. Of course we're in another Congress now and
the process has begun anew. The Udall Bill was reintroduced just two
weeks ago by Congressmen Upton and Waxman, and Senators McCain and
Wellstone, all distinguished colleagues of yours. That bill authorizes
$100 million next year for Parkinson's research up from the currently
budgeted $28 million. I and my associates in the National Parkinson
Foundation are and will continue to work to see this bill's enactment
and, after that, look to this distinguished committee to appropriate the
necessary funds that will truly hasten the cure of this terrible disease.
I would like to reiterate that it is estimated that there are 1 million
people with Parkinson's disease, 1% of the population over age 65 years.
Currently, the federal government spends about $7 billion a year caring
for them --- $7,000 per person. Patients, physicians and caregivers are
universally dissatisfied with what that money buys: hospitalization,
custodial care, institutionalization. It is estimated that for every
Parkinson disease patient there are 10 who will develop the disease if
they live long enough. What good will it do if we conquer cancer and we
banish heart disease and stroke if 10% of our population over 65 years
develop Parkinson disease and another 10% is consigned to caring for
them? If we increase our funding for Parkinson disease from $28 million
to $100 million, that is to say $100 per Parkinson disease patient, I
believe that within 5 years we will abolish the disease.
Mr. Chairman, and members of the Committee, please accept my sincere
appreciation for allowing me to appear before you today. I truly respect
what you are doing and wish you God's speed.
