2014-06-24T12:00:21-07:00 2013-12-31 NAWROCKI SMITH LLP 290 BROADHOLLOW RD STE 115E MELVILLE NY 117474822 990EZ 2013-01-01 161569293 CARDIO-FACIO-CUTANEOUS INTERNATIONAL CARD 6077729666 183 BROWN ROAD VESTAL NY 13850 Kayla Stein Treasurer 2014-06-24 true Michael E Nawrocki P00165703 6317569500 2013 2015-11-30 17:44:51Z X X www.cfcsyndrome.org X X 133637 X 66573 2557 0 64507 0 64507 0 133637 21530 760 1762 95708 119760 13877 406217 420094 X 405571 419992 753 430 406324 420422 107 328 406217 420094 To improve the quality of life through family support, research, and education. We are a rare disease advocacy group that provides literature to families and agencies that assist children born with the rare Cardio-Facio-Cutaneous syndrome. We host a website, biennial International family conferences, and a private family computer listserv and closed Facebook page. We support research projects on CFC syndrome. Conference Our conference is held every 2 years and brings affected families, research scientists and clinicians together in one place at one time so that they collaborate and share with knowledge to gain a greater understanding of CFC syndrome and learn about the latest discoveries and scientific research available. Families have a unique opportunity to be seen by the worlds greatest experts. Families are also provided workshop classes on a variety of topics to help them gain skills providing the best possible life for their child. 56011 Research We funded a research grant on Growth Failure found in CFC Syndrome thought the National Organization of Rare Disorders. $33,500. The growth in CFC has never been studied and there are currently no growth charts for doctors to use on this population of children. 33500 89511 Brenda Conger President 30.00 20000 Judy Doyle List Serv Lias 1.00 0 Luba Djurdjnovic Board Member 1.00 0 Shelley Greenhaw Board Member 1.00 0 Jenny Iacobelli board member 2.00 0 Pilar Magoulas Secretary 3.00 0 Molly Santa Cruz Vice President 1.00 0 Kayla Stein Treasurer 30.00 0 X false false false false false false false false 0 0 false false Kayla Stein 7053 Deerwood Trail West Bloomfield MI 483232084 2486818212 false false false false false false false false false false false false false NONE NONE true X 61301 70058 81632 76940 33580 323511 21648 26867 32993 81508 0 0 0 82949 70058 108499 76940 66573 405019 0 0 405019 6257 5777 4453 4300 2557 23344 0 6257 5777 4453 4300 2557 23344 0 0 89206 75835 112952 81240 69130 428363 0.94550 0.93850 0.05450 0.06150 X General Donations 59456 59456 2013 Conger Toast the Angels 5051 5051 64507 64507 64507 Other Expenses.1002 Office Expenses $846 Other Expenses.1005 Travel $463 Other Expenses.1007 Conferences, Conventions, and Meetings $47409 Other Expenses.1009 Depreciation $216 Other Expenses.1012 Insurance $1151 Other Expenses.1 Restricted Research Fund $33500 Other Expenses.2 Transportation expense $3534 Other Expenses.3 Hotel Expense $2629 Other Expenses.4 OUTSIDE SERVICES $2500 Other Expenses.5 TELEPHONE $1621 Other Expenses.8 CREDIT CARD EXPENSE $498 Other Expenses.9 DUES AND MEMBERSHIP $461 Other Expenses.10 board meeting expense $357 Other Expenses.11 Consensus meeting $328 Other Expenses.12 LICENSE AND PERMITS $115 Other Expenses.13 PROMOTIONAL ITEMS $50 Other Expenses.14 Bank and other service charges $30 Other Assets.1003 Machinery and Equipment - Beginning $753 Machinery and Equipment - Ending $430 Total Liabilities.1001 Accounts Payable and Accrued Expenses - Beginning $107 Accounts Payable and Accrued Expenses - Ending $328