First, some introductory comments are in order. Then on to the intended
posting.
1. Thanks Jon for the idea that I post some of The Parkinson's
Institute Auxiliary Bulletin each month on this Listserver. (Reference
Jon's posting on May 8 of our email exchange.)
2. I am Arvid Rosenboom ([log in to unmask]), Editor of the Auxiliary
Bulletin and officially a parkinsonian since 1988 (with symptoms which
predate my diagnosis considerably). I also do various other volunteer
work at The Parkinson's Institute (TPI).
3. I hope I have been true to my intention to edit out items which lack
general interest. (I've left some trivia to show what the Auxiliary is
and does.) You can help improve future newsletter postings from
me. Let me know how bored (or excited) you got while reading the items
below. I don't need a LOT of encouragement, but if you all are bored to
tears, I'll just go back to lurking! Regards, Arvid
THE PARKINSON'S INSTITUTE
AUXILIARY BULLETIN - May, 1995
TPI Auxiliary Holds Quarterly General Meeting
*********************************************
The Auxiliary held its quarterly general meeting at 10 AM, April 19,
with Pat Allen presiding. Carole Cassidy, first on the agenda,
discussed Public Relations and fund raising activities at the
Institute. She explained that a film crew from ABC News' "Primetime
Live" program was taping that day for a future TV show to announce the
release of a new book on Parkinson's Disease by Dr. Langston. The show
is scheduled to air on May 31, and Dr. Langston will also appear on
"Good Morning America" on June 1. She also announced that a reception
for community leaders will be held at The Parkinson's Institute (TPI)
on June 6.
Two seminars will be presented by the Institute, one on estate planning
for those interested in donating part of their estate, and another on
pallidotomies for Parkinsonians and families who are considering this
operation.
Carole reminded us that the Auxiliary provided about 30 jars of
homemade jam and jelly which were sent to major donors to the
Institute with a thank you note for their donation. She received many
letters of appreciation from the recipients. Since it was such an
appropriate and well liked gift, she would like to do it again this
year. She requested that the Auxiliary plan ahead and make about 60
jars of homemade jam and jelly for this use.
David Rosner, Administrative Manager, discussed goings-on and future
plans at TPI. He told of Connie Sainz, frozen to Parkinsonian stone
ten years ago by MPTP in a bad batch of heroin; unable to move, talk,
care for herself since then. A year ago this month, she received a
fetal cell brain transplant at Lund, Sweden. As the cells matured over
this past year, she has been able to do more for herself: like brushing
her hair and teeth, talking, standing. Dave also told us that Dr.
Widner, a member of the Swedish brain transplant team is currently
working at TPI to further refine the transplantation techniques in
experimental models of parkinsonism.
Dave reported on TPI plans to do carefully controlled pallidotomy
operations in the near future. (Pallidotomies were the subject of
Dave's article in the March issue of this bulletin.) The Institute will
collaborate with a nearby hospital, where the surgery will be performed
in an electrostatically shielded operating room by the resident
neurosurgeon in consultation with neurologists, movement disorder
specialists and researchers from TPI. The shielded room allows the
neurologist to 'listen' to the 'firing' of individual brain cells
picked up by an electrophysiological probe, mounted on the stereotactic
frame and attached to the patient's head. Using data gathered from
previous pallidotomies on primates and patients, the neurologist
selects the proper site based on a recognizable 'firing' pattern from
the nearby brain cells. Thus the neurosurgeon is able to precisely
place the required lesion for maximum benefit to the patient.
David also reported on the Twins Study, a major research study of many
pairs of twins to gather data on genetic aspects of Parkinson's and
other neurological diseases. This study will continue for many years in
the future with follow-up data collection from the twins and from
preserved tissue, blood and DNA samples.
He reported on the phasing out of the MPTP studies. This research study
follows 500+ drug users who suffered from Parkinson's-like symptoms
after they were exposed to MPTP in improperly prepared heroin.
Tracking their case histories has been an ongoing research project at
TPI for about 10 years. The Institute hopes to get additional money to
do a final PET Scan on these patients to record the continued
deterioration of brain cells. It is anticipated that the Institute
will continue to search for funding to continue this work.
The Institute is looking into the "managed care" community and
beginning to formulate a strategy for negotiating alliances with
various HMO's and local providers. TPI will provide referral services
for Parkinson's and other movement disorder patients of the health care
provider. Also TPI is looking for an Executive Vice President in order
to reduce Dr. Langston's administrative work load and to help bring the
Institute to a new level of function.
Other Business at the Quarterly Meeting
***************************************
Ed Giampaoli presented our treasurer's report, which showed the
following information for the quarter. Income: $1031.75; Expense:
824.47; Account balance: $1215.95 at end of Quarter. Unfortunately,
the report, developed by the previous treasurer did not show this data
in a concise report. Instead, the $3500 donation to TPI by the
Auxiliary was included in the February expenses, inflating the quarter
1 expenses to $4350.22. Ed took an action item to revise the
treasurer's report.
Ed also introduced new members, Jeanne Schaefer and Jon Stedman. He
announced that Pat needs help with organizing the Auxiliary office. He
proposed that TPI or the Auxiliary contact Interior Decorators in the
area and make them aware of the lovely wood carvings in our lobby. The
carvings are available to the decorators for their clients (and may
have beneficial tax consequences because funds received are donated to
the Institute).
Mildred Lewis presented the current status of the Auxiliary Greeters.
We have no greeter available for Friday afternoon and Jeanne Schaefer,
scheduled for Monday afternoon is presently on leave in order to take
care of a prior committment. As a result, the greeters need 2 (or more)
volunteers NOW! Please call Mildred and volunteer. In addition,
Mildred reported filling two open time periods because Chuck McClure
and John Iaconis have both overcome extended illness and are returning
with their wife (Ruth and Jean) to the regular greeters schedule.
Welcome back!
Pat Allen announced that Virginia Bloom has requested a leave of
absence for health reasons. We will all miss her very much and wish her
well and a quick return.
Pat also brought up the flag fund and project. A U.S. flag has been
donated to the Auxiliary by Audrey Lambert to fly in the TPI Parking
lot. A special fund has been donated to the Auxiliary by members of the
Bloom family for rigging (ropes) on the flagpoles, purchase of a
California flag and design and purchase of a special TPI flag. Pat
reminded us that we need to get on with the project, getting estimates
of the costs, additional donations if needed and an appropriate design
for the special TPI flag.
National Volunteers Week
************************
By the time you receive this, we will be in the middle of "National
Volunteers Week". The first week of May has been set aside in
recognition of our volunteer service to others. A big thank you from
The Auxiliary Bulletin, TPI, and all whose lives you have touched!
Workshop Elves in a Jam - Need Help to get Their Plans to Jell
**************************************************************
As noted above, Carole Cassidy needs about 60 jars of
homemade jams and jellies for a very good cause. To meet
that need the Auxiliary workshop needs donations of many
jelly jars (8 ounces and smaller). In addition, the
workshoppers need donations of fresh fruit from your
backyard trees. Please bring in as many jars as you can right
away, and any more that become available as you empty them.
Be sure to let a workshop regular know when your fruit tree is
about ripe so they can plan the jam and jelly making. Regular
Monday meetings are at Mildred's, but some of the jelly
making will be also be done at Pat Allen's.
The Parkinson's Institute Auxiliary Needs Volunteers
****************************************************
Auxiliary members please talk to your friends. Ask them to join us @
the Institute and greet patients, make/sell things for the GiftShop,
do administrative chores, office work, maintenance and repairs. And
have fun! Yes, be sure to tell all your friends how much fun you have
doing these jobs. Having fun is what the TPI Auxiliary volunteers do
best! Of course the group's charter doesn't say anything about fun.
The most important function is to greet patients, family & friends who
come to TPI's clinic. Make sure they feel welcome, comfortable, re-
laxed. Secondly, the Auxiliary must be self supporting so that no TPI
funds are needed to provide volunteer services. (For example, last year
the Auxiliary was able to donate $3500.00 To TPI from our Gift Shop
sales.) Thirdly, the volunteers provide general office work and
miscellaneous services in accordance with our learned skills and cap-
abilities now. (Last year Auxiliary members donated almost 8600 hours
of service to TPI. This helps TPI two ways. First, it reduces staffing
requirements and therefore costs for the Institute. Second, these hours
of service are reported in proposals for research grants and is
interpreted by the funding agencies as a grass roots vote of
confidence, which makes TPI better qualified to receive grants.)
With all the diverse jobs to be done and lots of volunteers to do them,
each of us can do what we like to do because that's when we have the
most fun! Now that's where prospective new Auxiliary members can
help. In order for each of us to do fun stuff, we need some more good
volunteers who want to do needed work for the fun of it. So members,
tell all your friends, or show them this article; and if you are not a
member, but interested, then phone or stop by soon at The Parkinson's
Institute, (408)734-2800 (Ext. 504) 1170 Morse Ave, Sunnyvale. Chat
with a volunteer to learn more about the jobs available. Browse through
our Gift Shop to see the kind of things we make and sell. Buy some if
you want! If you like what you see, sign up, join in, and have fun!
TPI Auxiliary Now Represented in the TPI Board of Directors
***********************************************************
Auxiliary member and director, Pat Allen has been accepted on the
Institute's Board of Directors as an ex officio member. She attended
her first meeting in March.
***********************************************
* AUXILIARY BULLETIN *
* Distributed monthly to selected TPI Staff *
* and all Auxiliary Members *
***********************************************
Editor: Arvid Rosenboom Contrib. Ed.: David Rosner
Info. Contrib.: Pat Allen Mildred Lewis Marty Burns
This Bulletin is solely for the information of the reader. A reasonable
effort has been made to provide accurate, complete and useful
information. However, these attributes cannot be guranteed. Mention of
any product or service does not imply its approval by the Bulletin
staff.
