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Board Meeting Summary: October 25, 2001
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The
meeting was called to order by President Jennifer Sonenshein, who expressed our
extreme sadness and condolences on the loss of long time Director, Richard
Rosenthal in the World Trade Center disaster on September 11th . On a
happier note, belated congratulations to Arielle and Allan Cohen on the birth
last month of their third child -- and first son – Samuel Avery; as well as
congratulations to Dr. Axelrod on the birth of her granddaughter, Erin Leah
Eisner. Allan Cohen presented his Treasurer’s Report as of
10/23/01, followed
by a slide presentation comparing figures for the past four years. Despite a
substantial investment and cash balance, research funding will be substantially
increased indicating the need for additional fundraising efforts on behalf of
our chapters Jennifer
then read to the Board copy of a contract re behavior, attendance and level of
participation that is being distributed to all Board members for their
signatures indicating
their agreement. Note: If you haven’t already done so, please mail back your
signed copy. The
following dates
have been scheduled for Board Meetings in January through June, 2002:
Monday, January 14,
Thursday, February 7,
Tuesday March 13, Thursday April 18,
Monday, May 13, and Thursday, June 6. (FD DAY is set for The
Journal 2001 drive has begun. The deadline is December 15th .
Prices remain unchanged - but a special introductory parent rate
is being offered to FD Parents who would like to participate the first time, at
a more affordable rate.
At the same time, the Fall issue of
Dys/Course was mailed with a special insert -- the testing flyer – in
all 14,000 pieces with a request that it be posted somewhere publicly or sent to
a friend. Jennifer
Sonenshein informed the Board members that a memorial fund has been established
by the family of Richard Rosenthal for his sons, Evan and Seth.
Please address all donations to: The
Richard Rosenthal Children’s Fund Laurent
Landau then reported on the newly elected Scientific Advisory Board (SAB) which
consists of: Gail Sonenshein, PhD, Boston University Medical School serving as
the first chairperson; Felicia Axelrod MD, New York University; Michael J.
Brownstein MD, PhD, National Institutes of Health; Robert Desnick MD,PhD, Mount
Sinai Medical Center; Robert Gross PhD, Dartmouth College; James Gusella PhD,
Harvard University; Kurt Hirschhorn MD, Mount Sinai Medical Center; Michael M.
Kaback MD, Universiity of California at San Diego: Edwin H. Kolodny MD, New York
University; Irwin J. Kopin MD, National Institutes of Health; James Lupski
MD,PhD, Baylor College of Medicine; Peter N. Ray, PhD Requests
for applications were placed in scientific journals with an October 31 deadline
for studies on the FD gene. At this present time there are 14 requests awaiting
SAB review and evaluation. Steve
Kietz, head of the PR Committee introduced Liz Thomas and Michael Willmann from
Ellipsis Marketing Communications who were there
to actively solicit our account. The PR search will continue with an
update to us at the next meeting.
David
Brenner is keeping our web site as current as possible and the Board was
reminded that additions must be presented to David in proper format so that he
does not have to retype the material. The
Website Igive.com was described and members were
encouraged to “go shopping”
-- a percentage of all purchases will be donated
to the Dysautonomia Foundation. Lisa
Joseph gave a comprehensive report on proposed fund raising activities. She and
Robin Landau are chairing the Paper Bag Players-children’s Theater on February
24th, 2002 at 3 PM which is geared for kids from 2 to 10 but is
great for everyone of all ages.
Lana Steiner is chairing the food part, and details will follow.
Proposed prices are $50 for the orchestra and $35 for the balcony with the opportunity to sponsor blocks of give-away tickets Other possibilities were discussed; volunteers were urged to sign up and actively participate. Save the date reminders were listed for scheduled events, namely the Sixth Annual Golf Classic next June; and “Kindred Spirits” the Philadelphia area Brunch , October 20, 2002. Beverly
Fettman reported on legislative activity in Florida and in
California The
meeting was adjourned at 10 pm.
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