2012-06-21T05:56:06-07:00 2011-12-31 990 2011-01-01 205505536 SAVING TINY HEARTS SOCIETY SAVI 7733739007 PO BOX 1058 DEERFIELD IL 60015 FRANCIE PAUL 2012-06-21 2011 2016-02-24 21:20:13Z 389377 false false X SAVINGTINYHEARTS.ORG X 2007 IL To raise money for grossly under-funded, lifesaving grass roots research of congenital heart defects (CHD's). This seed funding acts as a bridge for this research to millions of dollars of extramural funding from the National Institute of Health (NIH) or other outside funding. CHD's are Americas #1 birth defect affecting over 40,000 babies every year! 10 10 0 0 190507 266750 0 830 53395 72925 243902 340505 70000 508156 0 0 0 17205 12913 22436 82913 530592 160989 -190087 343879 153792 0 343879 153792 X To raise money for grossly under-funded, lifesaving grass roots research of congenital heart defects (CHD's). This seed funding acts as a bridge for this research to millions of dollars of extramural funding from the National Institute of Health (NIH) or other outside funding. CHD's are Americas #1 birth defect affecting over 40,000 babies every year! false false 100293 100000 THE STUDY OF UNBALANCE ATRIOVENTRICULAR SEPTAL DEFECT: A CHSS INCEPTION COHORT STUDY-We hypothesize that diagnostic criteria used to identify uAVSD (Unbalanced atrioventricular septal defect) are varied and inconsistent, and that this inconsistency results in inappropriate treatment decisions, which incurs suboptimal outcomes for patients with uAVSD. We further hypothesize that atrioventricular valve index (AVVI) will consistently delineate uAVSD from balanced forms of AVSD and that are other echocardiographic features that are important determinants of outcome as well. The principle aim of the study, therefore, is to define anatomic criteria which, when applied, result in optimal treatment outcomes for each patient with uAVSD resulting in improved survival and diminished need for reintervention. Additional study aims include defining other important clinical factors, such as patient demographics, coexisting conditions, and chromosomal abnormalities, which impact outcomes and thus may affect treatment strategy. MORE STUDY INFORMATION IS AVAILABLE AT WWW.SAVINGTINYHEARTS.ORG/RESEARCH/AWARDS/SEPTALDEFECT.HTML 99382 99090 FETAL & POSTNATAL EFFECTS OF HYPOXIA: This research will determine if there are factors which put infants with complex CHD at increased risk for brain injury due to abnormalities in blood flow to the brain that occur in the womb as a result of congenital heart disease (CHD). This study will show whether brain abnormalities identified at birth by magnetic resonance imaging (MRI) are related to blood flow alterations in the womb, and whether brain abnormalities found at birth are worsened by low brain oxygen levels that occur before, during, and after heart surgery.The specific aims of this study will be to show that abnormalities in blood flow in the brain assessed by ultrasound in fetuses with complex CHD are associated with abnormal brain findings on MRI obtained in the newborn period prior to surgery, and that sustained low oxygen levels in the brain measured in newborns using near infra-red spectroscopy (NIRS) monitoring before, during, and after repair of CHD, are associated with new or worsened findings on brain MRI obtained after surgery. A secondary aim will be to show that blood flow in the brain assessed by ultrasound in fetuses with complex CHD and preoperative brain abnormalities suggestive of delayed brain maturity will be associated with an increased frequency and/or severity of postoperative brain abnormalities shown to be associated with decreased brain oxygen levels. ADDITIONAL STUDY INFORMATION IS AVAILABLE AT WWW.SAVINGTINYHEARTS.ORG/AWARDS/HYPOXIA.HTML 96293 96000 DEFINING NEW PARADIGMS FOR ARRHYTHMIA AND SUDDEN CARDIAC DEATH IN CHILDREN: Human ANK2 mutations result in severe cardiac electrical and structural abnormalities (e.g. potentially fatal ventricular arrhythmias) in children and young adults. Despite the clear link between human ANK2 mutations and potentially fatal cardiac phenotypes in children, essentially nothing is known regarding 1) how human ANK2 mutations affecting ankyrin-B function cause severe structural and electrical dysfunction in the developing heart, or 2) how ankyrin-B expression is regulated in humans. The proposed research will combine a host of synergistic approaches and a newly generated animal model of ankyrin-B (ANK2) deficiency to define the cause of fatal congenital cardiac phenotypes in children with ankyrin-B mutations. We anticipate that the new information gained through the Saving Tiny Hearts Foundation will deliver critical new insight into our understanding of potentially fatal cardiac arrhythmia in children, as well as provide a necessary first step for developing improved diagnostics, as well as therapies for regulating cardiac function in common forms of pediatric heart disease. 213945 133359 509913 true true false false false false false false false false false false false false false false false false false false true true false false true false false true false false false false false false false false false false false false false false false false false false false false false false false true 0 0 false 0 false false false false false false false false false false false false 0 false false false false false false false false false false false X 10 10 true false false false false false false true true false false false true true true true true true false false false false IL X BRIDGET ZOCHER 7733739007 212 S FAIRVIEW AVE PARK RIDGE IL 60068 X STEVEN EISEN 1.00 X 0 0 0 JAMES CONZEMIUS 1.00 X 0 0 0 TEGWEN CONZEMIUS 1.00 X 0 0 0 PATRICK BROPHY 1.00 X 0 0 0 LAWRENCE KLUGE 0.00 X 0 0 0 LEE GUTHMAN 1.00 X 0 0 0 AMY BROPHY 0.00 X 0 0 0 BRIDGET ZOCHER 2.00 X 0 0 0 BRIAN PAUL 2.00 X 0 0 0 FRANCIE PAUL 1.50 X 0 0 0 0 false false false 0 140500 126250 266750 0 830 830 0 0 0 0 121797 140500 48872 72925 0 0 0 340505 830 428156 428156 0 80000 80000 0 0 0 0 0 0 0 0 0 0 0 0 0 0 450 450 1650 1650 6361 667 1017 4677 0 0 0 0 0 0 0 0 450 450 STATE FEES 125 125 NON-REFUNDABLE GALA VENUE 6000 6000 MEETING EXPENSE 1462 1090 186 186 EXPENSES-CONTRIBUTION FROM '10 2958 2958 CREDIT CARD EXPENSES 2852 2852 128 46 82 530592 509913 3474 17205 332879 148792 0 0 0 0 0 0 0 11000 5000 0 0 0 0 0 0 343879 153792 0 0 X 343879 153792 343879 153792 343879 153792 -190087 X false false false false false X 55318 70053 67055 190507 388547 771480 0 0 55318 70053 67055 190507 388547 771480 0 771480 0 0 0 771480 1.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true Ontario, Canada 0 0 research CHD VENOUS OBSTRUCTN 80293 80293 80293 ONTARIO, CANADA RESEARCH 80000 CHECK 1 true false false false false false Grantmaker's Description of How Grants are Used in Foreign Country ALL GRANTS ARE AWARDED BY THE MEDICAL ADVISORY BOARD. THE MEDICAL ADVISORY BOARD IS COMPRISED OF AN ELITE GROUP OF WORLD RENOWNED CARDOTHORACIC SURGEONS AND CARDIOLOGISTS. THE GROUP'S MEMBERS COME FROM NEW YORK, WASHINGTON, CHICAGO, OHIO, MASSACHUSETTES, UTAH, CANADA...PROGRESS REPORTS ARE A REQUIREMENT OF ANY GRANT ACCEPTANCE. THE MEDICAL ADVISORY BOARD REVIEWS THESE REPORTS BIANNUALLY. A LIST OF the medical BOARD MEMBERS is available ON THE SOCIETY'S WEB SITE. X false HIGHLAND PARK HIGH SCHOOL CHARITY DRIVE 140500 140500 ANNUAL GALA EVENT 121797 121797 32480 16392 262297 140500 121797 32480 16392 48872 72925 true WASHINGTON UNIVERSITY 660 S EUCLID AVE ST LOUIS MO 63110 430653611 65066 0 PATHOGENESIS OF HLHS THE OHIO STATE UNIVERSITY 370 WEST 9TH AVE COLUMBUS OH 43201 316025986 115 96000 0 PARADIGMS INFANT CARDIAC DEATHS CHILDS HOSP & CLINICS OF MN 2525 CHICAGO AVE S MINNEAPOLIS MN 55404 411754276 100000 0 UN ATRIOVENTRICULAR SEPTAL DEFECT CHILDRENS NATNL MEDICAL CNTR 111 MICHIGAN AVE NORTHWEST WASHINGTON DC 20010 530196580 99090 0 EFFECTS OF HYPOXIA ON NEURO OUTCOME CHILDRENS HOSP OF PHILADELPH 37TH ST AND CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 68000 0 BRAIN ATLAS CREATION FOR CRH INFANT 4 1 Grantmaker's Description of How Grants are Used ALL GRANTS ARE AWARDED BY THE MEDICAL ADVISORY BOARD. THE MEDICAL ADVISORY BOARD IS COMPRISED OF AN ELITE GROUP OF WORLD RENOWNED CARDOTHORACIC SURGEONS AND CARDIOLOGISTS. THE GROUP'S MEMBERS COME FROM NEW YORK, WASHINGTON, CHICAGO, OHIO, MASSACHUSETTES, UTAH, CANADA...PROGRESS REPORTS ARE A REQUIREMENT OF ANY GRANT ACCEPTANCE. THE MEDICAL ADVISORY BOARD REVIEWS THESE REPORTS BIANNUALLY. A LIST OF the medical BOARD MEMBERS is available ON THE SOCIETY'S WEB SITE. Form 990, Part VI, Line 19 Form 990, Part VI, Line 19: Other Organization Documents Publicly Available NOTIFICATION VIA EMAIL TO SOCIETY. EMAIL ADDRESS PROMINANTLY DISPLAYED ON SAVING TINY HEARTS SOCIETY WEBSITE UNDER EITHER GET INVOLVED LINK OR ABOUT US LINK VIA EMAIL TO ANY OF THE BOARD OF DIRECTOR'S MEMBERS. Form 990, Part VI, Line 11 Form 990, Part VI, Line 11: Form 990 Review Process CPA invited to a board meeting to review form 990. Form 990, Part VI, Line 2 Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et SEVERAL MARRIED COUPLES SERVE AS DIRECTORS. ALL MARRIED COUPLES SHARE A LAST NAME AND ARE EASILY IDENTIFIABLE. Form 990, Part III, Line 4d Form 990, Part III, Line 4d : Other Program Services Description OTHER PROGRAM SERVICES 4: OTHER PROGRAM SERVICES 5: OTHER PROGRAM SERVICES 6: AN INTERNATIONAL COLLABORATION TO CREATE A BRAIN MRI ATLAS FOR INFANTS WITH CONGENITAL HEART DEFECTS: 10,000 INFANTS ANNUALLY REQUIRE IMMEDIATE SURGICAL INTERVENTION. 50% of survivors suffer significant learning disability and behavior disorders. Brain injury both before and after infant heart surgery is common and is the subject of investigation at several institutions worldwide. Unfortunately the generalization of study findings from each center is hampered by a lack of a consensus injury classification system and the lack of a common framework to effectively compare data on brain maturation and injury prevalence. Now, through a large multicenter collaboration, a number of leading investigators have committed to contributing all of their existing pre-operative infant brain MRIs that were acquired as part of a study protocol. the investigators plan to develop a pre-operative brain MRI template that is specific to this population of infants with CHD. Such a template would provide the scaffolding upon which consensus definitions of pre-operative injury could be reached. Further, this atlas would allow further study on regional brain volumes, brain maturation and injury localization/severity. FOR MORE INFORMATION GO TO WWW.SAVINGTINYHEARTS.ORG/RESEARCH/AWARDS/BRAINMRI.HTML.