Organizations Filed Purposes:
TO FIND BETTER TREATMENTS AND A CURE FOR JUVENILE MYOSITIS AND IMPROVE THE LIVES OF FAMILIES.
THE ORGANIZATION DIRECTLY SUPPORTED RESEARCH AS FOLLOWS: 1) 196 ,106 TO THE CURE JM CENTER OF EXCELLENCE IN JM RESEARCH AT STANLEY MANNE CHILDREN'S RESEARCH INSTITUTE, AFFILIATED WITH ANN & ROBERT H. LURIE CHILDREN'S HOSPITAL IN CHICAGO, IL. THIS FACILITY HAS CARED FOR OVER 600 CHILDREN WITH JDM AND OTHER FORMS OF INFLAMMATORY MYOPATHY. THE TEAM IS WORKING TO DISCOVER THE BIOMARKERS OF JM ACTIVITY TO GUIDE THE UTILIZATION AND/OR CREATION OF MORE EFFECTIVE THERAPIES. THEY HAVE ALREADY IDENTIFIED A VARIETY OF GENETIC AND ENVIRONMENTAL FACTORS THAT NOT ONLY PLAY A ROLE IN THE ONSET OF SYMPTOMS, BUT ALSO GOVERN THE CHILD' S OUTCOME; 2) 200,000 TO THE GW MEDICAL FACULTY ASSOCIATES MYOSITIS CENTER IN WASHINGTON, DC. AS A NATIONAL REFERRAL SITE FOR INFLAMMATORY MUSCLE DISEASES, THE CENTER IS OFTEN CALLED UPON TO EITHER ESTABLISH A DIAGNOSIS OR TO PROVIDE A SECOND OPINION RELATED TO THE MANAGEMENT OF CHILDREN AND ADULTS WITH JM. THE CENTER ALSO SPECIALIZES IN JM RESEARCH AND EDUCATION WORKING IN COLLABORATION WITH THE NATIONAL INSTITUTE OF HEALTH (NIH); 3) 100,000 TO NACTS TO ADVANCE TRANSLATIONAL SCIENCE RESEARCH IN THE AREA OF JUVENILE AUTOIMMUNE DISORDERS; 4) 130,000 TO GEORGE WASHINGTON UNIVERSITY FOR A STUDY TO EXPLORE RELATIONSHIPS BETWEEN VARIOUS COMPONENTS OF FATIGUE PRIMARILY MEDIATED BY THE CARDIORESPIRATORY SYSTEM ; 5 62,500 TO CARRA TO SUPPORT EXPANSION OF THE REGISTRY TO INCLUDE PATIENTS WITH JDM; 6) 120,000 TO UNIVERSITY OF CALIFORNIA, SAN FRANCISCO FOR A FELLOW TO CONDUCT RESEARCH REGARDING LONGITUDINAL IMMUNE PROFILING FOR BIOMARKER DISCOVERY IN PATIENTS WITH JDM; 7 40 ,000 TO UNIVERSITY OF PITTSBURGH TO DETERMINE IF ULTRASOUND CAN DETECT MUSCLE DISEASE IN CHILDREN WITH ACTIVE INFLAMMATION; 8) 1,031 FOR TRANSCRIPTION SERVICES AND RECORDING DEVICES RELATED TO A MENTAL HEALTH FOCUS GROUP; AND 10 65,000 TO UNIVERSITY OF BATH (UK) FOR VALIDATION OF COMMERCIAL MYOSITIS AUTOANTIBODY PANELS LEADING TO INCREASED ACCESSIBILITY OF TESTING, STANDARDIZATION IN TESTING AND IMPROVED DIAGNOSTIC CRITERIA.
THE ANNUAL NATIONAL FAMILY CONFERENCE & WALK STRONG TO CURE JM EVENT WAS HELD IN ARLINGTON, VA JUST OUTSIDE OF WASHINGTON, DC. 90 FAMILIES ATTENDED INCLUDING 40 GRANDPARENTS , 150+ PARENTS, 70 CHILDREN, 50 TEENS AND OVER A DOZEN YOUNG ADULTS. 90 MEDICAL PROFESSIONALS ALSO PARTICIPATED IN A 1-DAY MEDICAL CONFERENCE TO SHARE THE LATEST ADVANCEMENTS IN JM RESEARCH AND TREATMENTS. FAMILIES CAPPED THE WEEKEND WITH ATTENDANCE AT THE WALK STRONG TO CURE JM DC EVENT.
THE ORGANIZATION IS COMMITTED TO INCREASING AWARENESS AND EDUCATION OF THIS RARE, INCURABLE AUTOIMMUNE DISEASE AS WELL AS PROVIDING A SUPPORT COMMUNITY FOR IMPACTED FAMILIES. THESE EFFORTS ARE ACCOMPLISHED THROUGH A VARIETY OF METHODS SUCH AS: ATTENDANCE AT MEDICAL CONFERENCES REPRESENTING CURE JM FOUNDATION AND ITS WORK/ACTIVITIES; DISTRIBUTION OF PRINTED INFORMATION CARDS, BROCHURES AND EDUCATIONAL BOOKS TO IMPACTED FAMILIES AND THE MEDICAL COMMUNITY; DISTRIBUTION OF WELCOME KITS TO NEWLY DIAGNOSED FAMILIES; NEWSLETTERS; EDUCATIONAL EVENTS AND GATHERINGS; FAMILY SUPPORT; SURVEY AND METRIC TOOLS; MAINTENANCE OF A PATIENT REGISTRY AND MESSAGE BOARD AND UPDATES/MAINTENANCE OF THE ORGANIZATION' S WEBSITE.
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 |
|---|
| James Minow | EXECUTIVE DI | 40 | $152,773 |
| Tracy Van Ness | DIRECTOR | 2 | $0 |
| Annie Mitchell | VICE PRESIDE | 5 | $0 |
| Tom Hume | CO-FOUNDER | 8 | $0 |
| Shari Hume | CO-FOUNDER | 42 | $0 |
| Suzanne Edison | DIRECTOR | 10 | $0 |
| Denise C Doria | CFO & DIRECT | 20 | $0 |
| Kevin Coffey | DIRECTOR | 2 | $0 |
| Ragan Cantrelle | SECRETARY | 12 | $0 |
| Kristine Alderfer | DIRECTOR | 10 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202032309349301993_public.xml