Dear Friends,

At the request of my father, Harold Jones, I am reposting the Testimony of
Joan I. Samuelson & the
Testimony of Muhammad Ali and Abraham Lieberman, M.D to the list because he
has had requests for it in response to a message he sent to the list
recently.

Karen Bardo

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TESTIMONY OF JOAN I. SAMUELSON PRESIDENT, PARKINSON'S ACTION NETWORK
Hearing of the House Appropriations Committee
Labor, Health and Human Services Subcommittee
February 4, 1998

I am one of a million Americans afflicted with Parkinson's disease and
related disorders.  I also am President of the Parkinson's Action Network,
which was created in 1991 to give a voice to our community in the effort to
speed research delivering breakthroughs and a cure for this dreadful
disorder.

I have the job today of focusing your attention on the particular needs of
my community, and  to convince you that the 1999 budget of the Labor-HHS
Appropriation must - yes, must - include a substantial increase for
Parkinson's research funding, pursuant to the $100 million authorization in
the Udall Parkinson's Research Act enacted in the last Congress.

Why am I so emphatic?

· Because the current federal policy on Parkinson's wastes billions in
public and private dollars coping with its effects, when millions would
produce a therapy that would restore function, and bring us back into the
world.

· Because the disparity in funding attributable to variations, invisibility
or political clout cannot continue.

Parkinson's - the disorder:  Parkinson's is a movement disorder caused by
the degeneration of brain cells that produce dopamine, a neurochemical
controlling motor function.  By the time 80% of those cells stop
functioning, symptoms of stiffness, tremor and slowness of movement begin
to emerge.

The conventional treatment for Parkinson's is a 30-year-old drug commonly
known as "L-dopa"  which attempts to replace the missing dopamine with an
artificial substitute.  It usually restores function to a certain extent
and it may seem at first like a miracle drug.  But it works inefficiently,
it produces side-effects, and eventually it does not work at all.  As the
dopamine cell degeneration advances, it strips away automatic movements
needed to walk, talk, swallow, even move at all.

Parkinson's - the impact:  Initially, we survive on a diet of desperate
hope, fed by L-dopa and related medications.  We attempt to keep work,
family and life moving smoothly, as the symptoms change in degree and
combination throughout the day, affected by diet, stress and fatigue.
Almost immediately, though, things dear to life are taken, such as, in my
case, the love of running and backpacking.  That begins a process of loss
that advances to strip away essential functions.

The impact on work:  Very soon it begins to affect working life, making
jobs dependent on motor skills impossible and jobs with any measure of
stress increasingly difficult.  In a 1988 study, a group of researchers at
the University of Rochester calculated that of the 44% of Parkinson's
patients in the first stages of the disease, 31% would lose their jobs
within one year as a result of Parkinson's.

Despite the common myth that Parkinson's only affects the oldest sector of
the country, in fact the average age of symptom onset is 57, with a third
of all victims' symptoms starting in their 20's, 30's and 40's.  As a
result, Parkinson's-caused early retirements and forced disability are the
norm.  Some lose their jobs simply due to the stigma.  The financial impact
is enormous.

Every sort of work is affected.  People who must have reliable motor
movement to do their work - beauticians, house painters, typists - lose
their employment quickly.  For the rest of us, it is a somewhat slower
process, but at some point the tension of worrying about how to fit a job's
demands in the daily schedule of Parkinson's symptoms simply is too much.

In my case, as a practicing lawyer and now running am advocacy organization
for our community, these are my daily struggles: worrying about getting to
a morning meeting and wondering when my first dose of medication will "kick
in," enabling me to function; needing to make a phone call, but not being
able to hold the telephone still with a shaking hand; seeing others put off
by my lurching gait, or my trembling hand.

The impact on daily functioning:  At some point the symptoms become an
impossible hurdle, as the tiny number of dopamine neurons left functioning
just can't team up with the medication any more, and are complicated by
drug side-effects.  At that point, the swing between too little and too
much movement is just too much to manage in the outside world.  We may
continue living for a long time, but we drop out of
sight.

The nation - indeed, the world - has been riveted on the impact this
disorder has had on Muhammad Ali.  It is essential to remember the unknown
Americans who, like Ali, are losing the battle to live a normal life.  They
tell of family holiday dinners they can't attend, for fear of knocking food
off the table.  They talk of walking into the bathroom, then suddenly
freezing up and needing help to finish bathing or using the toilet.

Every person afflicted with Parkinson's can describe the effort to manage
their medication so they are at their best when out of the house.  And
then, one day, that person starts disappearing, as the act of coping
becomes too much.  Perhaps if we died soon as a function of Parkinson's its
impact would appear more dramatic.  Instead, we slip out of the functioning
world and are forgotten.

The impact on our visibility: There is a common denominator in all these
cases: we start out courageously trying to power through our disability,
ignoring it, even hiding it, to maintain our normal lives.  We end up
silenced and imprisoned in our homes, our care facilities.  In either case,
there is an insidious ingredient: our suffering has been rendered invisible
to the outside world.

As a consequence, we have been neglected.  Attached is a chart, from
numbers provided by the NIH, showing direct Parkinson's research funding by
the NIH to be flat, at less than $30 million a year - that is, less than
$30 per patient - for a decade, and only slightly more now.  Estimated 1997
direct Parkinson's spending totaled $34 million, or $34 per patient. During
a decade in which the American public and the Congress have teamed up to
attack a wide variety of killing and
disabling disorders, we have left out of the fight.

We are finally here, coming out of the closet in some cases, coming in
wheelchairs and walkers in others, and being represented by loved ones when
we can't get here at all.  And the Congress is beginning to respond.  Last
fall Congress enacted the Morris K. Udall Parkinson's Research Act, which
would authorize the long overdue expansion of Parkinson's research, with
annual research funding at $100 million a year, which is the amount that
Parkinson's researchers tell us they need to maximize existing scientific
potential and speed the breakthroughs we need.  We are looking to this
committee to fund it, with a $100 million appropriation in the FY 1998
budget.

There is a terrible irony at work, however.  As we walk the halls of
Congress to drum up support for the Udall bill and the funding it will
need, we are told that no longer will Congress direct the NIH in its
funding needs, and that there is no more money to spare.  In effect, we are
told that our visibility comes too late.

There are two reasons we cannot accept this answer.  First, it is grossly
unfair to maintain a status quo funding disparity that, in effect,
continues to penalize us for our disease-caused invisibility.  As any
review of NIH spending will show, technical elimination of earmarking has
by no means eliminated de facto earmarking: spending by diseases continues
at rates pre-ordained by earlier increases.  As our "funding disparity
chart" (attached) is just one such example.

The President's recent announcement of a doubling of the Cancer Institute
budget over the next five years demonstrates this best.  Earmarking
continues under other names.  Parkinson's continues to be excluded.

There is another important reason the Congress must increase Parkinson's
funding in 1999.  As federal taxpayers, we are owed a rational health
spending policy.  That requires spending money to cure us rather than just
care for us.

The cost to America: The cost of Parkinson's in America is massive.  In
testimony before the Senate Special Committee on Aging in 1995, Dr. Ole
Isacson of Harvard estimated the cost to be in excess of $25 billion. The
Network's surveys of the costs Parkinson's disability incurs on the country
-- in treatment, physical therapy, hospitalization, disability payments,
lost productivity, and assisted living -- indicate an equal or greater
amount, which translates into a massive burden on public sources
such as Medicare, Medicaid, and Social Security disability.

The cost is so high because we typically live in a disabled state for a
long time, and the battle against loss of function is ongoing, and
expensive.  Parkinson's medication alone is very expensive, probably
costing Americans well over a billion dollars.  The largest costs can be
due simply to losing the ability to work or care for oneself, which is
absorbed by the government through higher Social Security, Medicare and
Medicaid spending. This takes a huge toll on the American families hit by
Parkinson's, but it also burdens the society and hits the taxpayer.

This massive financial waste will rise steeply if Parkinson's is not cured
before my generation of "Baby Boomers" hits the years when Parkinson's
symptoms are most prevalent.  Imagine the additional burden of lost tax
revenue, medical care and disability from Baby Boomers with Parkinson's.

The scientific promise: An examination of the scientific promise of this
disorder shows that an investment in Parkinson's research would return
many-fold.  The Dana Alliance for Brain Initiatives describes Parkinson's
as "one of the brightest spots in brain research."  There is no doubt that
huge, revolutionary breakthroughs are coming, and they will drive
breakthroughs for many other neurological and non-neurological disorders -
Huntington's, ALS, Alzheimers, spinal cord injury, diabetes and more.

Consider:

· Neural growth factor, in particular one known as GDNF.  Animal studies
shows the growth factor revives the dormant cells and produces dramatic
symptomatic improvement.  Human clinical trials have begun.
· Neural cell transplantation, which has shown that symptomatic improvement
results from the flourishing of transplanted dopamine neurons.  A few
patients are now symptom-free without  medication.
· Advances in genetics and in links between Parkinson's and environmental
factors such as heavy metals, herbicides and pesticides.
· Steady increase in insights into the exact disease process, in which the
cells appear to self-destruct after assaults from one or more of those
causative factors.
· Rapid advances in the understanding of the role of genetics in
Parkinson's, which also brings new clues about the disease process-and its
undoing.  A widely-cited 1997 discovery of the alpha-synuclein gene did not
produce a causal gene per se, but is a major clue in the matrix of
understanding.

But without question, those discoveries are coming in slow motion.  Every
scientist describes immense frustration with the slow pace of working on
these breakthroughs because of the tiny research investment.  That
translates directly into a breakthrough deferred into the future. According
to testimony before the Aging Committee last year by Dr. Ole Isacson of
Harvard, an additional $20-40 million per year spent to fund 100 of the
most effective preclinical and basic research programs (@
$200,000-$400,000 each) will produce new Parkinson's treatments within 2-3
years, an effective therapy or cure within 5 years.  According to a study
by Dr. Roger Kurlan of the University of Rochester, even a 10% slowing of
progression will save $327 million per year.  That is ten times more than
the federal government is spending on Parkinson's research.

We have been told there may not be enough money in the Labor-HHS allocation
to fund the Udall Act in full.  It is suggested that we are forcing a
reduction in funding for diseases that have done a better job at telling
their story, and been rewarded by higher research investments.  Although we
feel it is important to point out this disparity, reducing productive
research efforts in other biomedical arenas
is not the way to do it.

But the money must be found.  Perhaps Mo Udall is beyond saving.  But is
Muhammad Ali?  What about Billy Graham, or the Pope, Attorney General Reno
or Johnny Cash?  And what me, or about the unknown, invisible Americans I
represent today?  The 1999 Labor-HHS appropriation must provide the $100
million authorized because this country literally cannot afford to lose me
or the many others in the same predicament. With enough functioning
dopamine neurons back in action, all of us could be
back to working, caring for others as well as ourselves, paying taxes
instead of applying for Social Security disability.

Conclusion:  The human suffering that results from Parkinson's is immense
and incalculable. That alone is a good reason to invest in a cure.  The
fiscal drain compels it.  The only reason we have been neglected is our
historical invisibility, caused by the ravages of Parkinson's, the
devastating stigma attached to it, and inevitable silencing of us it
causes.  We now have "come out," as it were, to tell our story, only to be
told it's too late, that earmarking funding on the basis of need, or
scientific promise, or fiscal sense, is inappropriate.  That makes no sense.

We desperately want to hold on to our life dreams and our dignity.  That,
given the scientific promise of therapeutic breakthroughs, should be enough
to justify the investment.  What we also know now is that it is fiscally
irresponsible not to.  The Udall Parkinson's Research Act's $100 million
authorization must be funded in FY 1999.
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National Parkinson Foundation, Inc.

Written Testimony of Muhammad Ali and Abraham Lieberman, M.D. before the
House of Representatives Commerce Committee

Subcommittee on Health and Environment
"New Developments in Medical Research"
 2123 Rayburn House Office Building

 March 26, 1998

Mr. Chairman and distinguished members of this Subcommittee, my name is
Abraham Lieberman. I am Medical Director of the National Parkinson
Foundation and Executive Director of the Muhammad Ali Parkinson's Institute
in Phoenix, Arizona. I am accompanied today by my friend and patient,
Muhammad Ali who, of course, needs no introduction, and Mr. Nathan Slewett,
volunteer Chairman of the Board of the National Parkinson Foundation, whose
worldwide headquarters are located in Miami, Florida.

We are here at the invitation of Chairman Bilirakis whom I want to
personally thank and commend for holding these hearings on "New
Developments in Medical Research." Muhammad has assured me that he would
have preferred to speak directly to you today, but his Parkinson's disease
has robbed him of what was one of his most prized assets....the ability to
speak with resonance. I can assure you, however, that his thoughts and
muted speech remain as eloquent as ever.

We are here today for two principal reasons. First to enlighten this
committee and thereby the United States Congress, on the pathology of
Parkinson's disease, at least what we currently know about its causes,
course and treatment. Also, we would be remiss if we failed to use this
opportunity to demonstrate once again, why more research resources are
needed NOW to take advantage of some of the fantastic scientific
breakthroughs that are at our door step.

Parkinson's disease (PD) affects more than a million Americans, and costs
the United States more than five billion dollars a year in Medicare,
Medicaid and nursing home outlays. In addition it costs each patient five
thousand dollars a year for medications, doctor's visits and hospital
stays. As a society we
spend ten billion dollars a year for PD, without considering the indirect
costs of lost income, missed opportunities and family disruptions. The ten
billion dollars results in treatments that provide only temporary relief
because there is no cure. No Parkinson's patient, no care giver, no doctor
is happy, nor considers the ten billion dollars well spent.  At the time of
diagnosis, every patient had probably had Parkinson's disease for at least
four years. Based on the time between disease onset
and diagnosis, it's estimated there is at least one person who is
undiagnosed, for each patient who is diagnosed. In other words, there are
probably two million Americans with PD: 2% of the population over age 60,
and 4% over age 70.

The degeneration of nerve cells in Parkinson's disease is associated with a
particular particle, called a Lewy body, in each dying cell. Based on the
observation that the Lewy body is a marker for PD, and that 10% of the
population over age 60 years have Lewy bodies without symptoms of PD, it's
estimated that at least ten million Americans may develop PD, if they live
long enough. Lest the young be sanguine, and relegate PD to senescence, 15%
of all patients who develop PD are less than 50 years of age. And the
disease appears in adolescence. Given the increased chance of developing PD
with increased life, what is the point of conquering cancer, heart disease,
stroke, and diabetes if the end result is a population, 10% of whom have PD
and 10% of whom must care for the afflicted or live in dread of being
afflicted?  Public health, preventive medicine, and environmental safety
are laudable goals only if the resultant increased life span is satisfying
and free of the plague of Parkinson's disease.

Parkinson's disease results from the death of pigmented nerve cells in the
substantia nigra, part of the basal ganglia, the region of the brain
between the hemispheres, the creators and initiators of thought and
movement, and the brainstem and spinal cord, the executioners of movement.
In the past ten years, as a result of developments in molecular biology,
genetics, neurophysiology, and computer science, the mystery of cell death
is being unraveled. It's known that some neurons are more susceptible to
dying than others, that their death is associated with both external (to
the cell) and an internal (within the cell) generation of free radicals and
this, in turn, may be associated with the deposition of iron. Sadly, the
end result of Parkinson's disease is that the human brain, the highest
expression of creativity--rusts.

Whether the cause of Parkinson's disease is an externally produced toxin,
AN internally generated poison, a defect in the cell itself, or an abnormal
gene is the now the subject of intense thought, debate, study, and
experimentation.  A debate that, as recently as ten years ago, was
conceptually impossible and scientifically unprovable. Unraveling the
mechanism of cell death in PD, will increase our understanding of the more
complicated, disintegrative mechanisms in Alzheimer's disease and the aging
process itself.

Since the introduction of levodopa in 1967 it has been the mainstay of
treatment for PD. Levodopa is combined with a dopa decarboxylase inhibitor,
to facilitate its passage from the gut. There are several drugs including
MAO-B inhibitors, COMT-inhibitors, and controlled-release levodopa
preparations that enhance levodopa's activity. There are several other
drugs, dopamine agonists, bromocriptine, pergolide, ropinerole and
pramipexole, that activate the dopamine receptors.

Recent discoveries have shown that nerve cells, heretofore considered
incapable of regenerating themselves, are able to do so. This regeneration
occurs under the influence of trophic, or growth factors, small molecules,
poly-peptides, produced in the brain. There may be hundreds of trophic
factors, each one specific for one or two nerve cells, so as to limit
uncontrolled growth, and its resultant tumor induction. Several factors
have been identified, characterized, engineered and tested in animal models
of PD.  One of them glial derived neurotrophic factor (GDNF) is undergoing
clinical trials for Parkinson's disease. Knowledge of the mechanism of
action of trophic factors will increase our understanding of cell death and
aging and will lead to treatments heretofore thought possible only through
immersion in the legendary and elusive, "Fountain of Youth." The challenge
is to determine which trophic factors are relevant to which nerve cell, and
which disease, to deliver the factors into the nervous system and target
them to the relevant cells. These are complex engineering problems, but
ones, as with the World War II Manhattan Project which produced the atomic
bomb, are within the realm of being solved with our present technology.

Within the past ten years neuroanatomists, neurophysiologists and
neuropathologists have distinguished differences between the caudate
nucleus and the putamen, the two components of the striatum. They have
separated the ventral from the dorsal caudate, and ventral from the dorsal
putamen, and have identified several cell types within the striatum.
Meanwhile the neurochemists and molecular biologists have further
characterized the striatum's nerve cells by co-localizing them with one or
more of several neurotransmitters. The significance of the striatum's newly
discovered external geography, and internal architecture is being
scrutinized in PD and heretofore unknown relationships are emerging. While
the external characteristics of the striatum were being studied, the more
important
and challenging task of understanding the internal biology of the
individual cells has proceeded simultaneously.  Specific proteins, and
poly-peptides are produced in specific cells, and the ability of a cell to
produce a specific protein defines the individuality of the cell. The
ability to replicate, amplify or
inhibit these interactions will have consequences for our health and our
civilization as profound, and as monumental as splitting the atom.

Thirty percent of Parkinson's disease patients develop a dementia which has
many similarities to Alzheimer's disease. A smaller portion of PD patients
develop a dementia, at an earlier age, called Lewy-body dementia. Whether
the dementia of Parkinson's disease  and Alzheimer's disease are different,
or the same is now under intense investigation. Approximately 50% of
Parkinson's disease patients become depressed during the course of the
illness and require counseling and/or anti-depressant medication. In some
patients the depression is a reaction to the PD, but in most, depression is
an intrinsic component of PD.  Unraveling Parkinson's disease will lead to
a better understanding of the affective disorder.

At the level of the human brain, as distinct from the human spirit, the
formulation, initiation and execution of a thought, is conceptually similar
to that of a movement. An idea recognized in the Bible by the sages who
described the consequences of a stroke by saying, "If I forgot you,
Jerusalem, let my right hand lose (not its strength or power) but its
cunning." We are in the midst of a revolution in understanding the brain.
The centerpiece of this is Parkinson's disease. With increased financial
support from the government, foundations and private donors, the scientific
community will unlock the mother-lode of information contained within the
Parkinson brain that will banish these diseases and ameliorate the aging
process itself.

Mr. Chairman, as I am certain you have witnessed, the Parkinson's community
has mounted one of the most visible and effective grassroots campaigns in
history to secure additional needed funding for Parkinson's research. The
culmination of this monumental effort was last November's passage of the
Morris K. Udall Parkinson's Research and Education Act of 1997. When the
Udall Bill was signed into law, both the President and Vice President
specifically recognized its intent as a very essential part of the
Labor/HHS appropriations Bill in which it was included as an amendment.
Also recognized by the President was the bill's principal sponsor, and your
colleague, Congressman Fred Upton who was on hand to witness its signing.
It was truly a great moment.

I am proud to say that the National Parkinson Foundation regarded the
passage of the Udall bill as its highest legislative priority and lobbied
aggressively for more than two years in favor of its enactment. Muhammad
appeared last April on behalf of the NPF before the House Appropriations
Committee to urge the Udall bill's passage and requested that that
committee appropriate the funding called for in the Udall Bill after its
enactment. That has not yet happened.

The Morris K. Udall Parkinson's Research and Education Act is authorizing
legislation. It does not provide for the funding that the entire
Parkinson's community has worked tirelessly for, and fully expects will
hasten the cure for this dreaded disease. Today, the Congress has before it
the responsibility to fund the Udall legislation making this victory a full
one rather than a hollow one.

Some have said that the Udall legislation provides for up to $100 million
for Parkinson's research. The National Institutes of Health have recently
released numbers attributed to Parkinson's disease research that will soon
exceed the $100 million provided for in the Udall legislation. This makes
it appear that additional funding for Parkinson's research is not necessary.

This conclusion is UNACCEPTABLE! Whatever the National Institutes of Health
claims to be spending on Parkinson's disease is based upon an analysis that
I am personally not in a position to challenge. However, the entire
Parkinson's community believed that the Udall Bill would authorize at least
$65 million additional dollars for Parkinson's disease research. This
figure is based upon the funds leading Parkinson researchers tell us are
needed to dramatically advance our finding a cure or significantly improved
treatments for Parkinson's disease.

The Parkinson's community has sought, and believes it has found a
sympathetic and supportive ear in Congress. Parkinson's activists
nationwide have sacrificed some of the best remaining years of their lives
advocating a substantially increased federal investment in Parkinson
research so that a
cure may be found in their lifetime. To say to them now that there is no
new money for Parkinson's disease is also unacceptable. If Congress is to
honor the intent of the Udall Bill it must appropriate $100 million of
additional funds for Parkinson's research for each of the next three fiscal
years.

The NPF recognizes that federal funding is one of several ways to support
medical research. Therefore we have taken unprecedented steps to increase
the role of the private sector in finding a cure for Parkinson's disease.
The National Parkinson Foundation is the largest voluntary health agency
representing the interests of people with Parkinson's disease. It supports
51 NPF Centers of Excellence worldwide. The research conducted by these
centers is cutting edge and the grants it awards are subjected to a peer
review process similar to that of the National Institutes of Health. It
also provides a myriad of patient services including physical therapy,
occupational therapy and speech therapy to persons suffering from
Parkinson's disease.

Furthermore, the NPF works closely with NIH in three ways. First, we
provided needed additional funding to the National Center for Human Genone
Research when they were looking for the gene that was believed to cause a
form of Parkinson's disease. Within a short time, that gene was indeed
located as highlighted in the President's State of the Union Address.
Secondly, we are cooperating with NIH in providing "bridge" grants to those
researchers whose grant applications were of high scientific merit, but
fell just below the funding level. And finally, the National Parkinson
Foundation has just designated the Parkinson intramural research facility
at NIH as a NPF Center of Research Excellence.

Thank you, Mr. Chairman and members of this distinguished committee for the
opportunity to appear before to talk about Parkinson's disease. Muhammad
and I have dedicated our lives to finding a cure for this disease and seek
your help.

I will be happy to answer any questions that you may have for either
Muhammad or me.