Sample Edit Board Memo

To:             Editorial Page Editors and Writers

From:           Name, telephone number

Subject:        Increased Funding for Parkinson's Research

Date:           August XX, 1999


        For many lethal and disabling disorders, the scientific potential to
revolutionize treatment and find preventative tools is well within
reach.  The U.S. is in the midst of a boom in biomedical research with
incredible advances being made in genetics, high tech tools and
treatments.  To keep up with these discoveries and build on the
incredible advances made, we must continue to fund federal medical
research at adequate levels.

        In 1997 the Congress overwhelmingly adopted the Morris K. Udall
Parkinson's Disease Research Act, historic legislation that authorized
the National Institutes of Health (NIH) to devote up to $100 million
per year for Parkinson's-focused research.  To date that funding has
not been appropriated — despite promising research and a compelling
national need.  Moreover, the NIH continues its disturbing practice of
reporting to Congress funding totals for Parkinson's that include a
significant amount of research — more than half! — that is not truly
focused on Parkinson's disease as required by the Udall Act.

        Consistent, focused research efforts have yielded great progress for
diseases like cancer, breast cancer and AIDS.  During this decade,
these diseases have all seen more than 98% of their total NIH research
funding go for direct research.  To realize a cure, Parkinson's needs
and deserves the same proportion of direct research that NIH has
devoted to other serious diseases.

        Parkinson's disease advocates are urging Congress to act this year to
follow through on the promise of the Udall Act by adding to basic
Parkinson's disease research the NIH is already conducting,
specifically funding increases of $50 million for the National
Institute of Neurological Disorders and Stroke and $25 million for the
National Institute of Environment Health Science in the fiscal year
2000 Labor/HHS Appropriations bill.  To provide the resources for these
much needed increases, Congress must support efforts to keep the NIH
budget on track to double over five years.

Time is not neutral for people with Parkinson's — the disease is
progressive, chronic and absolutely relentless — and people living with
Parkinson's can't afford to wait any longer.  Researchers are
tantalizingly close to the cure, but finding it in time for those
currently suffering requires the additional funding authorized by the
Udall Act.



What is Parkinson's Disease?

        The symptoms of Parkinson's disease, or Parkinsonism (PD), result from
the degeneration of nerve cells in the mid-brain, and the corresponding
loss of the neurotransmitting chemical dopamine produced by those
cells.  Parkinson's destroys physical movement, coordination and
speech, and ultimately leaves its victims incapable of caring for
themselves.  Parkinson's robs people of their lives and their ability
to contribute fully to their family, community and country.

        Parkinson's does not discriminate — it afflicts people regardless of
gender, race, background, behavior, lifestyle or geographic area.
Despite the common perception that Parkinson's is an "old person's"
disease, the average age of diagnosis is 57 years, with many diagnosed
in their 30's and even 20's; yet due to the debilitating nature of the
disease, the Parkinson's community has been largely invisible to the
public and the government.

                There are one million Americans living with Parkinson's and its
related disorders.
                60,000 new cases are diagnosed each year — one every nine minutes.

        The annual costs (health care, disability, loss of productivity,
long-term care, etc.) associated with Parkinson's total $25 billion — a
cost that will only increase as the Baby Boom generation ages.
Medications and currently available surgical therapies are also very
expensive.  Federal research funding will decrease the health care and
disability costs associated with Parkinson's.  For example:

                If the onset of Parkinson's were delayed by just 5 years, the U.S.
would save millions of dollars.

                Just a 10% slowing of the disease progression will save the U.S.
$327 million per year.  (Dr. Kurlan, University of Rochester)

                Reducing the number of falls related to Parkinson's would reduce the
$40,000 or more dollars spent for treatment and/or hospitalization.  An
estimated 38% of Parkinson's patients fall; 13% fall more than once a
week.  (Dr. Koller, University of Kansas)

        Tremendous research potential exists in several areas, including
neuroprotective agents, improved stimulation devices, cell replacement,
and bioengineering of cells.  But this potential can only be translated
into improved therapies, treatments and potential cures if there is
adequate federal support for Parkinson's research.

        Conventional treatments revolve around pharmaceutical substitutes for
dopamine (such as L-dopa) and drugs that temporarily enhance the cell's
dopamine production.  Such measures lose their effectiveness as more
cells are lost — so a true Parkinson's cure requires finding ways of
stopping cell degeneration, and replacing damaged cells with healthy,
viable ones, or nurturing those cells back to life.

        Researchers are reporting promising results among patients using a new
device designed to deliver an electrical signal deep inside the brain,
much as a pacemaker does to the heart muscle.  The "deep brain
stimulator" has received preliminary FDA approval for continued trials.
 This may offer the benefits of pallidotomy — a surgical lesion that
alleviates symptoms by short- circuiting the abnormal neuronal activity
that results when the motor system is starved for dopamine — with
greater flexibility, and without permanent damage to the neuronal
pathway.  Meanwhile, pharmaceutical companies have developed more
effective "agonists" and "inhibitors" — drugs that increase the
effectiveness of conventional L-dopa therapies, buying time for
patients while a more enduring cure is researched.

        The Udall Act calls for $100 million in "research focused on
Parkinson's disease" because focused research yields results.
Parkinson's robs people of their lives and their potential.  It is time
for Congress to increase funding for Parkinson's-focused research so
that no more Americans will have to suffer that fate.





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