PARKINSON'S  NEWSLETTER of the Delmarva Chapter,
American Parkinson Disease Association
September 1995
4049 Oakland School Road
Salisbury, Maryland 21801-2716
1-410-543-0110- FAX (410)749-1034
Internet Address:
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DINNER TUESDAY, OCTOBER 10, AT 5:30 SALISBURY STATE UNIVERSITY STUDENT CENTER
 
NO SEPTEMBER MEETING
 
With an annual dinner in early October, a meeting in late September would be
too much meeting in too little time. There will be a regular support group
meeting on Tuesday, October 31 [Halloween] in the Community Room of the
Salisbury Mall (old mall) at 1:00. This means there will be two meetings in
October, but the dinner will be more for good food, socializing, and having a
fun time.
 
DINNER TO BE FUNDRAISER
 
The dinner is supposed to serve three purposes. It will be an enjoyable
meeting and dinner for us. It will help us make the general public more aware
of our problems and what can be done politically  to aid in the scientific
search for a cure. It will be a fundraiser for the American Parkinson Disease
Association (of which we are a chapter) and the Parkinson's Action Network
which is a favorite Parkinson's organization of our speaker and his wife.
Both organizations are working for us, and both deserve our help in return.
 
The price of the dinner is $30, and $20 of that should be a charitable
deduction next spring for those who use the long form 1040 and itemize
deductions.  A similar dinner in Washington last spring was $250 per plate,
but this is not Washington. I'll bet we will have a better dinner. For those
on limited incomes and for Salisbury State students, there are some
discounted dinner tickets available.
 
MORTON KONDRACKE TO BE KEY SPEAKER
 
Morton Kondracke is Executive Editor and Columnist of Roll Call, a Washington
political newspaper, and a contributing editor of the New Republic. His
column is syndicated and appears regularly once or twice a week in
Salisbury's Daily Times. He is also a regular panelist on The McLaughlin
Group seen on over 300 TV stations nationwide including Washington's channel
4 on Saturday evening and Maryland Public Television (Salisbury's channel 28)
Sunday noon.  He has also appeared on Meet the Press, Face the Nation,
MacNeil/Lehrer Report, This Week with David Brinkley, and C-Span. He is
particularly interested in our cause because his wife Millicent is
Parkinsonian. She appeared before the Senate Special Committee on Aging in
June, telling the committee about the human and economic costs of
neurological disorders. The exact topic of Mr. Kondracke's after dinner talk
is not yet determined, but it will be about what is or ought to be going on
in Washington with a slant toward health care [Medicare and the balanced
budget dilemma are likely for starters plus progress on the Morris K. Udall
bill], the elections of 1996, and whatever else is current news the afternoon
of October 10, 1995. A seated dinner is something new for us, so we are going
through a learning experience. I need help in contacting people in the
community who would like to join us for a good meal and a presentation by a
nationally recognized political journalist. The menu is Parkinson-friendly.
There are no steps to climb. It should be a dinner and an evening to
remember.
 
BAD NEWS FROM APDA STATEN ISLAND
 
As you probably know from an earlier Parkinson's Newsletter, Frank Williams,
the former executive director of the American Parkinson Disease Association,
left APDA under less than friendly terms. We had looked upon Frank as a good
friend of the chapter. Frank was the manager operating under President Mario
Esposito's over-all direction. Frank's duties in the organization were
supposed to move almost exclusively into fundraising under Salvatore
Esposito, the new president. Frank resisted the change in his function at
APDA.
 
After his departure, the day-to-day running of APDA moved into new hands.
Then it was found that there were significant discrepancies between some
larger contributions to APDA and the APDA bank account. In numerous cases
over a period of many years, contributions to APDA had been deposited to an
APDA account in a bank in Northfield, Minnesota, using a Minnesota address as
a mailing address. The APDA was not aware of this account, and payments to
the former executive director were made from the account. The amount of money
misappropriated has not been released by APDA officers. They used
"considerable" and "substantial" to describe the loss. The organization had
purchased insurance to cover employee theft with a small deductible ($250 I
believe) and a maximum limit far too small to cover more than a small portion
of the missing money. The loss is rumored to be "high six figures but
probably less than a million."
 
The APDA did not know about the missing money because it never appeared on
the APDA books as contributions received since it was skimmed off before
being entered. According to what I have been told, the former executive
director, with the probably unwitting assistance of a volunteer in
Northfield, Minnesota, is solely responsible for the misappropriations. We
hope that some or all of the money can be recovered. The police have been
informed. Formally charging a thief with embezzlement has mixed results.
There is a chance that a jury might find him innocent, especially if he is a
sympathetic defendant who is a heart transplant recipient. A defendant would
want the best defense team he could afford. With what is left of the
embezzled funds that he would lose anyway if convicted, there is no reason to
scrimp on defense costs. The APDA could wind up in effect paying the defense
costs if the embezzler is prosecuted. However, the employee dishonesty
insurance purchased by APDA demands police notification as a condition
subsequent before paying a claim.  This sort of situation is bad for any
organization and is especially bad for a charitable organization which has
depended and still depends upon donations from the general public who have
trusted the organization to "find the cure and ease the burden." The amount
of money here is smaller and less spectacular than the case was with the
United Way, but percentage-wise it is worse. To the best of my knowledge, the
news media have not reported the crime. Perhaps the O. J. Simpson trial
preempted our story or pushed any story about our problems deep into the want
ads. Another event made the problem seem even worse. The APDA maintains
several bank accounts in a New York bank for bookkeeping purposes and
transfers money from one master account as needed into subsidiary accounts.
Just as the embezzlement was coming to light, a check was written on a
subsidiary account. The bank employee who normally switched funds from the
master account to subsidiary accounts went on vacation, and an APDA check for
$2,000 to a California chapter was wrongly bounced. This bounced check led
some to speculate [erroneously] that APDA was bankrupt. Some damage has been
done to APDA in addition to the missing money. About this time, Dr. Abraham
Lieberman resigned as Chairman of the Medical Advisory Board and went with
his clinic to the National Parkinson Foundation. Two west coast chapters have
left APDA. Contributions, particularly from larger contributors, may have
fallen somewhat as donors who are aware of the problem watch for further
developments. Some volunteer workers have resigned. Possible merger with the
United Parkinson Foundation is off for now. The image of the APDA has been
tarnished.
 
GOOD NEWS FROM APDA STATEN ISLAND
 
The management of our home office faced the embezzlement problem squarely and
openly. The APDA did not advertize that there had been a major
misappropriation of funds, and they did not hide it either. Since the
discovery of the crime, steps have been taken to prevent any reoccurrence.
The APDA will change its auditors to one of the major international firms.
This is a step which should have taken place several years ago. The APDA was
criticized by a charitable oversight group for using accounting techniques
unlike most other charitable organizations. The problem was in the method and
not in the facts. A major accounting firm would know how to present an income
statement and balance sheet in a form customary for a national charity and
may be more alert in detecting discrepancies. The new I.R.S. requirement of a
receipt for deductibility of any contribution of $250 or more will add to the
safety of accounts.
 
In a telephone chat with Bernie Beasley, an APDA director, I told him I would
like to have Dr. Roger Duvoisin as the new Chairman of the Medical Advisory
Board.  Joel Gerstel, APDA's Director of Chapter Operations, called me to ask
whom I would recommend to be the new Chairman of the Medical Advisory Board.
I said I wanted Dr. Duvoisin if he would take it. Joel Gerstel telephoned
days later to tell me that I was the first chapter president to know that Dr.
Duvoisin had accepted the chairmanship. I felt both elated and honored. Dr.
Duvoisin is perhaps best known among Parkinsonians as the author of
Parkinson's Disease, a Guide for Patient and Family now in its third edition
" and rumors are that there will be a fourth in the not too distant future.
He is the author or co-author of over a hundred medical journal articles. He
is Chairman of Neurology at Robert Wood Johnson Medical School in New
Brunswick, New Jersey, and the "boss" of Dr. Margery Mark, the neurologist I
use. He and Dr. Mark were the featured non-Hopkins speakers at the symposium
we had near Baltimore three years ago. He is a flexible researcher. If you
want to "prove" that there is no genetic factor in Parkinson's, you can cite
many of his early articles. If you want to "prove" the opposite, cite his
later ones. We need a Chairman of the Medical Advisory Board who is willing
to look at new ideas "to find the cure" and accept them if they are better
than the old ideas. Dr. Duvoisin is a "hands on" caring clinician who sees
his share of patients rather than hiding himself in an "ivory tower" while
his underlings see the lowly patients. In August of 1994 Mrs. Duvoisin (his
boss) and I had a long discussion, but she did most of the talking. She
recounted several stories about her husband's inability to get home on time
and his working on his day off because he felt he had to give his patients
all the care they needed although he was on salary and most of his patients
in his early years were indigent. This semester he is on sabbatical leave
from Robert Wood Johnson Medical School, but he still comes into the clinic
on an irregular schedule. Caring and compassion are also good "chairman
traits" to look for in directing research dollars designed "to ease the
burden."  The APDA could not have made a better choice, and we should feel
thankful that he accepted the job. Chairmanship of the Medical Advisory Board
is an unpaid position.
 
DELAWARE SENATOR IS CRUCIAL FOR UDALL BILL
 
The resignation of Senator Robert Packwood makes Delaware's Senator William
Roth the heir apparent to the chairmanship of the Senate Finance  Committee.
Senator Roth's office leans toward unsegregated funding of medical research.
We would rather have him favor funding Parkinson's research as a line item.
We can live with group funding if the Udall Bill is passed and the NIH gets
the message that Parkinson's research should receive its share of funding
from this bill [an authorization bill without its own funding]. The Delaware
Parkinsonians need to write to and visit Senator Roth asking for the help he
can give us. Senator Biden is important later on, but Senator Roth's help is
absolutely essential now. We need more co-sponsors in the House of
Representatives, especially Republicans.
 
DINNER DETAILS:
 
1. WHERE: Salisbury State University Student Center. The Student Center is
the big building on the southern end of the campus. Use the Dogwood Road
entrance. Coming from Salisbury on Route 13 South, Dogwood Road is the first
right after apparently passing the campus and just before the General Tire
store. Turn right off of Dogwood into the big parking lot across from the
TCBY yogurt store. The dinner will be in the large room to the right as you
come in from the parking lot. There are no steps to climb. All doors are wide
enough to accommodate wheelchairs or walkers. Restrooms with handicap
facilities are up a ramp nearby.
 
2. WHEN: Dinner will start at 5:30. This time was chosen to be late enough to
accommodate those whose workday ends at 4:30 or 5:00 and early enough for
there to still be some daylight left. The Kondrackes also want to have the
dinner end soon enough for them to drive back to the Washington area at a
reasonable time. If someone can not "make it" by 5:30, a "sixish" arrival
will not go hungry.
 
3. DRESS: This is a formal dinner, but attire should be casual and
comfortable.
 
4. MENU: Current menu plans call for crab bisque and a salad which will not
require cutting; boned chicken cut to easily manageable pieces, green beans,
potatoes au gratin, and hot breads; a cheesecake dessert; and the usual
complement of coffee and tea. The foods selected will be easy to handle for
those with dexterity problems but ordinary enough for non-Parkinsonians not
to notice. Since this is an evening meal, the entrie will not be low protein.
Those who wish can double-up on the carbohydrates in the breads.
 
5. COST: Thirty dollars a plate for a "benefit" dinner is inexpensive by many
standards but may be high for many who have to spend exorbitant amounts on
Sinemet, Eldepryl, and other drugs. Discount tickets are available for those
who would like to attend but would have budget problems at the full price.
Discount tickets will look no different from the others. Since we are using
Salisbury State University facilities, Salisbury State students automatically
qualify for discount tickets and may be able to receive a credit against the
discount ticket if on the university's meal plan. Twenty dollars of the full
ticket price should qualify as a charitable deduction if one itemizes on the
income tax next spring.
 
6. SPONSORS AND BENEFACTORS: To raise additional money, to cover our cost for
severely discounted tickets, to cover some non-food incidental costs, and to
have some "just in case" money to cover our minimum guarantee to the
university food service, we would like to have several sponsors who would
contribute $100 or more to the fund raiser or benefactors who would
contribute $250 or more. Sponsors and benefactors will be recognized in the
dinner brochure.
 
7. RESERVATIONS: Call me at 543-0110. If I am not in, leave me a message on
the answering machine after the "beep."
 
An additional mailing will be made about two weeks before the event.
 
This is a dinner for everyone. It is a chance to hear what is going on in
Washington from a well-known Washington insider. This should be of interest
particularly to those with Parkinson's and their families, to those who have
an interest in what is happening as respects health care and government
funding, to those who follow national politics, and to those who are
journalism or political talk-show panel TV fans.
 
Will Johnston