Organizations Filed Purposes:
THE ORGANIZATION IS DEDICATED TO IMPROVING THE EXPERIENCES AND OUTCOMES OF CHIARI AND SYRINGOMELIA PATIENTS BY: 1.PROVIDING ACCURATE, UP-TO-DATE, AND EASY TO UNDERSTAND INFORMATION TO PATIENTS SO THAT THEY CAN TAKE CONTROL OF THEIR HEALTH CARE AND MAKE INTELLIGENT,INFORMED DECISIONS. 2. RAISING AWARENESS AMONG FAMILY, FRIENDS, AND THE GENERAL PUBLIC SO THAT THEY CAN BETTER UNDERSTAND WHAT PATIENTS ARE GOING THROUGH AND ARE BETTER ABLE TO PROVIDE SUPPORT. 3.RAISING AWARENESS AMONG, AND PROVIDING ACCRUATE, UP-TO-DATE INFORMATION TO THE MEDICAL COMMUNITY, SO THAT ERRORS IN DIAGNOSIS AND TREATMENT ARE REDUCED. 4.SPONSORING RESEARCH TO ADVANCE THE UNDERSTANDING OF THESE CONDITIONS AND IN THE END CONQUER CHIARI.
SINCE OUR INCEPTION, WE HAVE MADE TREMENDOUS STRIDES TOWARDS THE GOAL OF CONQUERING CHIARI, INCLUDNG:1.SERVING AS A RESOURCE FOR INFORMATION ON CHIARI AND RELATED TOPICS VIA OUR WEBSITE (WWW.CONQUERCHIARI.ORG) AND VARIOUS PUBLICATIONS. 2. SPONSORING RESEARCH FOR CHIARI VIA OUR CONQUER CHIARI RESEARCH CONFERENCE AND THE CONQUER CHIARI RESEARCH CENTER LOCATED AT THE UNIVERSITY OF AKRON, IN WHICH GRANTS FOR RESEARCH PROJECTS FOCUS ON IMPROVING DIAGNOSTICS, ASSESSING THE COGNITIVE EFFECTS OF CHIARI, GENETIC RESEARCH, AND OTHER CRITICAL AREAS. 3. PROMOTING AWARENESS THROUGH OUR CONQUER CHIARI WALK ACROSS AMERICA, WHICH IS AN ANNUAL FUNDRAISING EVENT CONSISTING OF A SERIES OF WALKS HELD ACROSS THE COUNTRY ON THE SAME DAY.
GRANTS FOR RESEARCH PROJECTS FOCUSED ON IMPROVING DIAGNOSTICS, ASSESSING THE COGNITIVE EFFECTS OF CHIARI, GENETICS RESEARCH, AND OTHER CRITICAL AREAS. MOST FUNDING IS DIRECTED TOWARDS THE CONQUER CHIARI RESEARCH CENTER (CCRC) AT THE UNIVERSITY OF AKRON, THE WORLD'S FIRST RESEARCH LABORATORY DEDICATED SOLELY TO ADVANCING THE MEDICAL AND SCIENTIFIC UNDERSTANDING OF CHIARI MALFORMATION. THE CCRC IS A STATE OF THE ART FACILITY, STAFFED WITH DISTINGUISHED RESEARCHERS, WORKING DILIGENTLY TO: APPLY THE LATEST ENGINEERING TECHNIQUES AND ANALYSIS TO IMPROVE DIAGNOSES AND TREATMENT OPTIONS, LEVERAGE THE CONQUER CHIARI PATIENT REGISTRY TO STUDY THE EPIDEMIOLOGY AND NATURAL HISTORY OF CHIARI, FOSTER COLLABORATIONS WITH LEADING CLINICIANS AND SCIENTISTS TO ADVANCE THE CONQUER CHIARI RESEARCH AGENDA AND ACT AS A FOCAL POINT FOR THE CHIARI RESEARCH.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Richard Labuda | EXECUTIVE DIRECTOR, SECRET | 40 | $80,000 |
| Charles O'Hanlon | DIRECTOR | 1 | $0 |
| Mark Tomczak | TREASURER, BOARD MEMBER | 1 | $0 |
| David Lee | VICE PRESIDENT, BOARD MEMB | 1 | $0 |
| Richard Kushner | PRESIDENT, BOARD MEMBER | 1 | $0 |
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public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202100509349301140_public.xml