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Board Meeting Summary: February 7, 2002
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The meeting was called to order at 7:10 pm by
Jennifer Sonenshein with sincerest condolences to Ellen Sue Hattenbach, Director
and President of the Bernie Hattenbach Chapter in Connecticut, on the loss of
her beloved father, Larry Lamont, also a long-time Director of the Foundation
and a most devoted supporter.
The Treasurer's report followed. To date, the Journal Drive has realized $250,000. Journals will be mailed shortly. Steve Fass reminded the Board that The Richard Rosenthal Children's Fund should not be forgotten. 100% of the donations go directly to the family and are very much appreciated. The Richard Rosenthal Children's
Fund A "Miracle Day" donation just received amounted to $5,000 thanks to the efforts of Laurent Landau and Adam Sachs. Laurent explained that CIBC/Oppenheimer sets aside a Tuesday in December when commissions earned are earmarked to help children's organizations. Spreading the word among traders and financial friends, would help to promote greater participation (and donations) for next year. Lisa Joseph announced that a Fundraising Committee meeting would be held at 6:00 pm before the next Board meeting --on Tuesday night, March 12th -- to plan future programs, etc. Robin Landau reported that tickets sold for the Paper Bag Players amount to 227 currently; 19 of which are donations for children of 9/11 Families (which are distributed by the Paper Bags Players organization). We will have a ticket pickup/hospitality table in the Lobby and will also invite people to remain at the close of the performance for (kosher) refreshments and socializing. Date is Sunday, February 24th at 3 pm. The Purim Baskets are moving selling steadily according to Cari Pepkin -- 100 baskets in all, so far, have been ordered. Volunteers are needed to prepare the baskets for mailing and/or distribution. If you can possibly help, please contact Lana Steiner as soon as possible. Remember too that the baskets are adaptable for all occasions at $18 per basket plus a nominal mailing fee. The Golf Outing date has been changed to Tuesday, June 25th, 2002. (instead of 6/18). In order to expand revenue possibilities Steve Fass and Paul Wexler reported that they are looking for Honorees who can bring in "new" blood. A company sponsorship of the affair would also be great - and they are considering a special Journal as well - besides the usual raffle prizes, goody bags, etc. They ask that everyone give thought to possible honoree candidates, and contact either Paul or Steve as soon as possible. The Philadelphia Brunch is being held on Sunday, October 20th, 2002 with a very upbeat comedienne guest speaker, Linda Richman, who has cut her usual fee in half - the theme of the affair is "Kindred Spirits" featuring FD families in general and siblings specifically. A dairy brunch is planned at a fabulous, newly renovated Hotel, with a capacity of 800. Lisa reminded everyone that Philadelphia was not that far away from New York, and it would be nice to have as many of you as possible join us on that date! Paul reported that he has a connection to the Islanders Hockey Team. They are auctioning off autographed Jerseys and memorabelia at a Sunday March 10th afternoon game. Dysautonomia has been named as a recipient of a portion of the auction, and tickets for that game could be a fun family outing. Contact Paul if you're interested. David Brenner reported that a generous friend, who insists on remaining anonymous, has purchased the available domain name: familialdysautonomia.net on our behalf. He has done so to ensure that no other organization could appropriate the name so closely identified to ours (familialdysautonomia.org and familialdysautonomia.com). He has provided us with a gift of protection in perpetuity, and we are most grateful and appreciative. Laurent Landau reported on the status of the research funding. The researchers whose grant proposals were not deemed fundable (by the Scientific Advisory Board) were so notified by January 30th. It is important to note that the Foundation has reached funding levels that require detailed contracts, with protective clauses, indemnification etc., all of which had to be created from scratch and cleared legally. Six awards letters totaling $436,104 are finalized and will be going out tomorrow - February 8th - a list of grantees will follow shortly. An intensive, lengthy and sometimes heated discussion ensued and it was reiterated that the Board had voted to settle the patent issues before any action could be taken on the Rubin grant proposal. Also, Steve Fass reminded the Board that our confidentiality agreement remains in effect and should not be forgotten. A motion to authorize, propose and finalize a license agreement with Mass General and Fordham/Rubin was overwhelmingly approved, with only one opposed. Steve Fass, Gerry Adler and Ken Sonenfeld will handle the negotiations in a timely fashion, hopefully with a progress report by our next meeting, March 12th. Because of the lateness of the hour, the remainder of the agenda was tabled and the meeting was formally adjourned at 9:30. Respectfully submitted, Lenore Roseman Executive Director
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