Board Meeting Summary: December 6, 2001

We proceeded directly to a PR report pinpointing contacts and progress made:1) a meeting with Rabbi Richard Address from the Union of American Congregations (reform) who received flyers, brochures etc. to distribute at their national convention in Boston; and whose publication on Genetics which the Foundation sponsored, is currently due. 2) Faye Ginsberg's Clarins/ Make A Wish Foundation article will appear in January VOGUE magazine with a wonderful "blurb" on FD. 3) Meeting with NY representative of Make a Wish Foundation (coincidentally) to advise us that they are ready, willing and able to grant wishes for children between the ages of 2 ½ years and 18 years old. They will send us specific information for our web site to encourage requests from FD children.

We have negotiated with the American College of Obstetricians and Gynecologists (ACOG) for a list of 30,000 members covering the United States and Canada and a mailing alerting them to the availability of testing for FD via specific letter and brochures is being processed at this time. Furthermore, the information that we sent to the American Academy of Pediatrics Convention and to the Human Genetics Conference via NORD generated several hundred requests for information.

At this time Steve Kietz introduced Ron Resnikoff, President of Mitchell Resnikoff & Co., a PR firm from Philadelphia, who handled the National Gaucher Foundation campaign very successfully. Mr. Resnikoff's presentation was very interesting and he outlined various marketing strategies to create awareness, stressing complete separation from fundraising, as well as answering questions on logistics, etc. It was suggested that we join with other groups for carrier testing, early diagnosis and Jeff Goldberger offered to contact Bob Desnick and Canavan's about combining our efforts. Steve Kietz will ask Ron Resnikoff to submit a proposal for the next Board meeting.

The 2001 JOURNAL fund drive is in full swing. Please remember that the deadline is December 15th with publication due in February, 2002.

David Brenner reported on the Internet/Web site indicating that the Resource Guide is being updated and linked to PubMed. He requested all committee chairs to submit information and/or articles exactly as they are to appear on the web site, and to let him know when dated information is outdated and needs to be removed.

Fundraising Chair, Lisa Joseph reported on the up-coming Paper Bag Players matinee on February 24, 2002 at 3pm Invitations are being printed and will be going out shortly for this "finest and funniest Theater for Children" that works for people of all ages - young, old and older! Tickets to the benefit performance may be donated to a family directly affected by the Sept.11 disaster.

Purim Baskets - sample of which was displayed by Lana Steiner - are very pretty and will be available for sale not only for Purim, but for other happy occasions at $18 per basket. Flyers and order blanks will be sent out for your information and use - and arrangements for shipping gift baskets will be available.

Lisa reminded everyone that many of the fundraising forms still need to be filled out and returned to her- your participation is very important, so please sign up now!

Laurent Landau followed with a report on the Scientific Advisory Board - 14 grant requests were submitted by the October 31 deadline and a 15th - from Dr. Rubin - this past week. The grants have been divided into two categories; animal and other. There are 6 RFAs in the animal category, 4 of them are mouse models; and the remaining 9 are "others". The entire process was based on NIH's operating guidelines. Reviews are being prepared currently and we are working to set up two different conference calls covering both groups. between now and December 21, 2001. Because of the holidays it was agreed that we would have to delay the scientific evaluations and funding decisions until our next Board meeting which will be held on Monday evening, January 14, 2002

There is no news update on Max Hilz' NYU negotiations, but we still have reason to hope that he will be able to join us in September 2002.

The meeting was adjourned at 9:50 pm. with best wishes to everyone for a happy Chanukah and a great year ahead!