2025-08-12T13:38:49-07:00 2024-12-31 362716239 Barnes Givens & Barnes Ltd 200 E Evergreen Ave Suite 117 Mount Prospect IL 60056 990 2024-01-01 953378526 DYSTONIA MEDICAL RESEARCH FOUNDATION DYST 3127550198 ONE EAST WACKER DRIVE 1730 CHICAGO IL 60601 JOHN DOWNEY Treasurer 2025-08-12 true true William J Barnes P00399658 2247642442 2024 2025-03-06 01:10:19Z JANET HIESHETTER ONE EAST WACKER DRIVE 1730 CHICAGO IL 606011980 3990298 false X WWW.DYSTONIA-FOUNDATION.ORG X 1977 CA THE MISSION OF THE DMRF IS TO ADVANCE RESEARCH FOR MORE EFFECTIVE TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA, TO PROMOTE AWARENESS AND EDUCATION AND TO SUPPORT THE WELL BEING OF DYSTONIA AFFECTED INDIVIDUALS AND FAMILIES. 25 25 13 725 0 2774096 2851281 128610 0 55844 327960 28309 35511 2986859 3214752 1033462 973113 0 861892 870581 0 250485 1498633 1115629 3393987 2959323 -407128 255429 6443694 6422430 1591075 1298142 4852619 5124288 X THE FOUNDATION HAS THREE MAIN PURPOSES: (1)TO ADVANCE DYSTONIA RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR ALL FORMS OF DYSTONIA; (2)TO PROMOTE DYSTONIA AWARENESS BY SPONSORING WORKSHOPS AND SYMPOSIUMS FOR MEDICAL PROFESSIONALS AND PATIENTS, BY EDUCATING MEMBERS OF CONGRESS ABOUT DYSTONIA AND THE NEEDS OF THE DYSTONIA COMMUNITY, BY ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3)TO SPONSOR DYSTONIA PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND PROMOTION OF VIRTUAL EDUCATION MEETINGS AND ELECTRONIC SOCIAL NETWORKS FOR DYSTONIA-AFFECTED PERSONS AND FAMILIES WHO ARE UNABLE TO ATTEND MEETINGS. false false 1582373 973113 PROGRAM: SCIENCEISSUING 3 REQUESTS FOR APPLICATIONS FOR SCIENTIFIC RESEARCH; MANAGING THE PEER REVIEW PROCESS OF 24 SUBMITTED GRANT RESEARCH FELLOWSHIP AND CLINICAL FELLOWSHIP APPLICATIONS; SELECTING, FUNDING AND MANAGING 7 RESEARCH GRANTS, 4 RESEARCH FELLOWSHIPS AND 2 CLINICAL FELLOWSHIPs, ALL AIMED AT CREATING A BETTER UNDERSTANDING OF THE PATHOPHYSIOLOGY OF DYSTONIA, IDENTIFYING AND MODIFYING CARRIER GENES, AND DEVELOPING IMPROVED TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA; ANDMEETING WITH PHARMACOLOGICAL AND BIOTECH COMPANIES TO ENGAGE THEM IN THE DEVELOPMENTOF TREATMENTS FOR DYSTONIA; ANDPLANNING AND SPONSORING THE SAMUEL BELZBERG 7TH INTERNATIONAL DYSTONIA SYMPOSIUM IN APRIL 2027; ANDCONTINUED FUNDING OF A CLINICAL FELLOWSHIP PROGRAM DESIGNED TO SUPPORT TRAINING OF PHYSICIANS IN PREPARATION FOR A CLINICAL AND/OR RESEARCH CAREER IN MOVEMENT DISORDERS WITH SPECIAL FOCUS ON DYSTONIA; ANDSPONSORING AND PARTICIPATING IN DOMESTIC AND INTERNATIONAL SCIENTIFIC MEETINGS INCLUDING THE INTERNATIONAL CONGRESS OF PARKINSON'S DISEASE AND MOVEMENT DISORDERS; DYSTONIA COALITION ANNUAL MEETING; AMERICAN NEUROLOGISTS ANNUAL MEETING; AND PATHOGENESIS OF DYSTONIA WORKSHOP.HOSTING A MEETING OF THE PATHOGENESIS OF DYSTONIA WORKING GROUP TO SUPPORT EFFORTS IN DEVELOPING TARGETED EFFECTIVE TREATMENT. ORGANIZING AND HOSTING A MEETING OF 18 INVESTIGATORS TO SUPPORT THEIR EFFORTS TO WORK COLLABORATIVELY AND BUILD SCIENTIFIC WORKSHOPS.REVIEWING CURRENT RESEARCH DATA AND EXPLORING STUDIES NEEDED TO ACCELERATE IMPROVED TREATMENTS; ANDSUPPORTING AND MAINTAINING THE AVAILABILITY OF RESOURCES TO ACCELERATE DYSTONIA RESEARCH GLOBALLY SUCH AS THE DYSTONIA BRAIN COLLECTIVE AND GLOBAL DYSTONIA REGISTRY FOR USE BY THE INTERNATIONAL DYSTONIA COMMUNITY.IN ADDITION, THE DMRF IS SERVING IN ITS FifTEENTH YEAR WITH NO COMPENSATION AS THE ADMINISTRATIVE CENTER FOR THE DYSTONIA COALITION, WHICH is a collaboration of medical researchers and patient advocacy groups supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. The goal of the Coalition is to advance the pace of clinical and translational research into dystonia to find better treatments and a cure. The objectives of the Coalition are to develop a fuller understanding of the many different features of dystonia and how they change over the years, to develop validated diagnostic strategies and rating tools for diagnosis and monitoring patients in clinical trials, to establish a natural history study biorepository where samples of blood and other materials can be stored and distributed for research, to catalyze clinical trials for promising new treatments and to promote education and awareness. THE DMRF WAS RESPONSIBLE FOR MANAGING $651,904 RESTRICTED FOR DYSTONIA COALITION WORK NOT INCLUDED IN THE FOUNDATION'S REPORTED ANNUAL REVENUES AND EXPENSES. THE DMRF ORGANIZED THE DYSTONIA COALITION'S ANNUAL MEETING.The DMRF partnerS with Frontiers Media to PUBLISH THE "Dystonia", the first scientific journal dedicated exclusively to the disorder. The journal bringS visibility to the growing Dystonia field and highlightS advancements in science and clinical practice. By gathering together a select group of researchers exploring this important issue, the DMRF'S GOAL IS to establish connections between great scientific minds to better understand the mechanisms of dystonia. 597110 PROGRAM: AWARENESS AND EDUCATIONPUBLISHING THE "DYSTONIA DIALOGUE" NEWS MAGAZINE THREE TIMES A YEAR UNDER THE DIRECTION OF THE VOLUNTEER EDITORIAL BOARD AND DISTRIBUTING IT VIA MAIL OR ELECTRONIC COPY TO OVER 53,000 PATIENTS, FAMILIES, AND INTERESTED PERSONS TO INFORM THEM OF THE LATEST RESEARCH AND FOUNDATION ACTIVITIES; ANDCREATING AND DISSEMINATING OVER TWENTY-Nine DYSTONIA RELATED EDUCATIONAL RESOURCES AS WELL AS PROMOTING AND DISTRIBUTING A CHILDREN'S BOOK ABOUT DYSTONIA AND CD/DVDS TO REQUESTING INDIVIDUALS TO EDUCATE THEM ABOUT THE VARIOUS FORMS OF DYSTONIA AND TREATMENT OPTIONS; ANDHOSTING A COMPREHENSIVE WEBSITE, WEBINARS, AND ELECTRONIC SOCIAL NETWORKS SUCH AS THE ONLINE DYSTONIA BULLETIN BOARD, TWITTER, FACEBOOK, AND YOUTUBE EDUCATIONAL RESOURCES POSTINGS TO PROVIDE EASY ACCESS TO INFORMATION FOR AFFECTED PERSONS AND THEIR FAMILIES; ANDCREATING AND DISSEMINATING A MONTHLY ELECTRONIC NEWSLETTER AND PERIODIC EMAIL ALERTS TO SHARE CURRENT INFORMATION ON DYSTONIA RELATED EVENTS, NEWS, AND ACTIVITIES; ANDCREATING AND DISSEMINATING A DYSTONIA AWARENESS PROGRAM DESIGNED TO EMPOWER PEOPLE TO SHARE THEIR PERSONAL STORIES AND INCREASE THE PUBLIC'S AWARENESS OF DYSTONIA; ANDPARTICIPATING IN ADVOCACY TO PROMOTE AWARENESS AMONGST LAWMAKERS ON TOPICS IMPORTANT TO DYSTONIA PATIENTS. SEE SCHEDULE O, PART III 4D FOR DETAILS. 110242 PROGRAM: MEMBERSHIP AND SUPPORTPLANNING AND SUPPORTING VIRTUAL COMMUNITY FORUMS ATTENDED BY PATIENTS AND THEIR FAMILIES WHICH PROVIDE INFORMATION ABOUT CURRENT RESEARCH AND TREATMENT OPTIONS AND AN OPPORTUNITY TO DEVELOP PERSONAL NETWORKS AND REDUCE ISOLATION FOR THOSE AFFECTED BY DYSTONIA; ANDCREATING VIRTUAL EDUCATIONAL FORUMS FOR DYSTONIA-AFFECTED PERSONS AND THEIR FAMILIES; AND PROMOTING SUPPORT RESOURCES TO AID IN DISEASE MANAGEMENT AND QUALITY OF LIFE SUCH AS A NETWORK OF SUPPORT GROUPS AND AN ELECTRONIC SOCIAL NETWORK, INCLUDING BULLETIN BOARDS AND TELEPHONE COMMUNICATIONS WITH INDIVIDUALS AFFECTED BY DYSTONIA AND OTHER INTERESTED PARTIES; ANDMANAGING 55 SUPPORT GROUPS AND FORUMS IN COMMUNITIES ACROSS THE COUNTRY AS AN ENDURING RESOURCE FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES; PROVIDING ONGOING LEADERSHIP TRAINING AND NETWORKING FOR VOLUNTEER SUPPORT LEADERS BY CREATING ELECTRONIC FORUMS FOR LEADERS TO SHARE EXPERIENCES AND PROVIDE PEER SUPPORT, PROVIDING WEBINAR TRAINING AND ONGOING SUPPORT FOR SUPPORT LEADERS, AND DISTRIBUTING A SUPPORT GROUP MANUAL WHICH PROVIDES VALUBLE INFORMATION AND RESOURCES FOR EFFECTIVE SUPPORT LEADERSHIP (146 SUPPORT GROUP MEETINGS WERE HELD);ANDPROVIDING MEETING MANAGEMENT SUPPORT SUCH AS EMAIL AND POSTAL NOTIFICATIONS AND A WEB-BASED CALENDAR ABOUT UPCOMING SUPPORT GROUP MEETINGS INCLUDING SUPPLYING DYSTONIA BROCHURES TO ALL SUPPORT GROUPS. 72862 PROGRAM: ADVOCACY THE DMRF PROVIDES THE STAFF AND ADMINISTRATIVE SUPPORT FOR THE DYSTONIA ADVOCACY NETWORK, A COLLABORATION OF FOUR DYSTONIA ORGANIZATIONS WORKING TO MEET THE POLICY NEEDS OF THE DYSTONIA COMMUNITY. FOR THE PAST EIGHTEEN YEARS, THE DYSTONIA ADVOCACY NETWORK HAS BEEN INSTRUMENTAL IN EDUCATING CONGRESS ABOUT THE BENEFITS OF LISTING DYSTONIA AS A CONDITION ELIGIBLE FOR STUDY ON THE DEPARTMENT OF DEFENSE (DOD) PEER-REVIEWED MEDICAL RESEARCH PROGRAM (PRMRP), THUS MAKING THE CONDITION ELIGIBLE FOR INVESTIGATORS TO COMPETE FOR RESEARCH FUNDING. $32 MILLION HAS BEEN AWARDED ON DYSTONIA RESEARCH THROUGH THE DOD PRMRP PROGRAM. ON BEHALF OF THE FOUR DYSTONIA ADVOCACY NETWORK ORGANIZATIONS, THE DMRF ENGAGES A LEGISLATIVE CONSULTANT TO TRACK LEGISLATIVE ACTIVITIES ON CAPITOL HILL, AND ELECTRONICALLY DISSEMINATES ACTION ALERTS TO STAY CONNECTED WITH KEY LEGISLATORS. THE DMRF ALSO SUPPORTS A NATIONWIDE NETWORK OF VOLUNTEER ADVOCATES WHO CONTINUALLY WORK TO EDUCATE MEMBERS OF CONGRESS ABOUT DYSTONIA AND ADVANCE THE COMMUNITY'S LEGISLATIVE AGENDA. VOLUNTEERS MEET WITH POLICYMAKERS AS NEEDED THROUGHOUT THE YEAR TO ADVOCATE ON BEHALF OF THE DYSTONIA COMMUNITY ON ISSUES SUCH AS INCREASED RESEARCH FUNDING FROM THE NATIONAL INSTITUTE OF HEALTH, ACCESS TO HEALTHCARE, AND APPROPRIATE, AFFORDABLE REIMBURSEMENT FOR DYSTONIA TREATMENTS. 72862 2362587 true true false true false false false false true false true false false false true true true false false true true true false false true true false true false true false false false false false false false false true false false false false false false false false true 14 0 true 13 true false false false false false false false 0 false false false false false false false X 25 25 true false false false false false false true true false false true true true true true true true false false AK AL AZ CA CO CT FL GA IL KS KY MD ME ME MI MN MO MS NC NH NJ NM NY OH OK OR PA RI SC TX UT VA WA WI X X JANET L HIESHETTER 3127550198 ONE EAST WACKER DRIVE CHICAGO IL 60601 JANET HIESHETTER Sec/EXEC DIR 59.00 0.00 X 183898 0 15971 DEBORAH DURRER DIR DEVELOPMENT 38.00 0.00 96599 0 33498 JENNIFER MCNABOLA DIR FINANCE 30.00 0.00 95167 0 29167 MARK RUDOLPH President 5.00 0.00 X X 0 0 0 JOHN DOWNEY Treasurer 3.00 0.00 X X 0 0 0 RICHARD LEWIS Vice President 2.00 0.00 X X 0 0 0 BARBARA KESSLER Vice President 2.00 0.00 X X 0 0 0 KAREN ROSS Vice President 2.00 0.00 X X 0 0 0 CAROLE RAWSON Vice President 2.00 0.00 X X 0 0 0 PAULA SCHNEIDER Vice President 2.00 0.00 X X 0 0 0 Ron Hersh Vice President 3.00 0.00 X X 0 0 0 Allison London Director 1.00 0.00 X 0 0 0 FRANCES BELZBERG Director 1.00 0.00 X 0 0 0 MARILYNNE HERBERT Director 1.00 0.00 X 0 0 0 STEFANIE JACKSON Director 1.00 0.00 X 0 0 0 DIANE RUDOLPH Director 1.00 0.00 X 0 0 0 JOEL PERLMUTTER MD Scientific Dir 3.00 0.00 X 0 0 0 ERWIN JACKSON Director 1.00 0.00 X 0 0 0 BILL MCLAUGHLIN Director 1.00 0.00 X 0 0 0 Art Kessler Director 1.00 0.00 X 0 0 0 SANDRA WEIL Director 1.00 0.00 X 0 0 0 ROSALIE LEWIS Director 1.00 0.00 X 0 0 0 Jon Davis Director 1.00 0.00 X 0 0 0 Dennis Kessler Director 1.00 0.00 X 0 0 0 LIZ RAWSON Director 1.00 0.00 X 0 0 0 Chris Von Der Ahe Director 1.00 0.00 X 0 0 0 BRIAN KEANE Director 1.00 0.00 X 0 0 0 Marc Miller Director 1.00 0.00 X 0 0 0 Robin Miller Director 1.00 0.00 X 0 0 0 DAN LEWIS Director 1.00 0.00 X 0 0 0 375664 78636 1 false true false JAN TELLER MA PHD NIP 7773338319 LUCZNIKOWIO NIEMCZ PL 86-032 CHIEF SCI ADVISOR 154008 1 5193 397461 2448627 95696 2851281 0 165250 165250 0 0 0 887657 724947 162710 162710 162710 34499 397461 34499 0 49555 16100 33455 33455 0 MERCHANDISE SALES 900099 2056 2056 2056 3214752 198221 165250 709399 709399 0 263714 263714 0 199869 136990 39835 23044 0 541555 373197 107520 60838 13231 9118 2627 1486 60037 36188 12986 10863 55889 38514 11096 6279 0 24070 24070 30084 4798 24385 901 51731 51731 0 28633 28633 295147 230624 22709 41814 0 0 96141 65839 11919 18383 0 106710 76332 18931 11447 75439 67668 1024 6747 0 96860 90493 3413 2954 0 0 4828 3431 752 645 10369 7071 1533 1765 Postage and Shipping 90764 74038 3706 13020 Printing and Publications 83816 53602 64 30150 Miscellaneous 46225 9850 25473 10902 Supplies 41263 33154 2060 6049 33549 26836 3515 3198 2959323 2362587 346251 250485 689422 838865 346741 641513 0 529047 84931 0 0 0 0 0 43585 35632 8263 7953 4628936 4643298 0 0 0 241285 205870 6443694 6422430 93240 88967 563470 499428 75000 601276 505776 258089 203971 1591075 1298142 X 2799728 3149091 2052891 1975197 4852619 5124288 6443694 6422430 255429 16240 X false true X true false X 2419076 2761025 2391324 2798629 2851281 13221335 0 0 2419076 2761025 2391324 2798629 2851281 13221335 1103839 12117496 114134 99596 114512 137703 165250 631195 0 3779 48112 44707 3776 2056 102430 13954960 0.86830 0.82360 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false true true false true false false true 20693 false false 20693 false false Part II-B, Line 1i - Other Activities Description See schedule O Part IV - Additional Information false true X 36428 28475 7953 7157 7157 7953 Financing lease liability 3756 Operating lease liability 200215 203971 X 3238127 16240 35768 52008 3186119 28633 28633 3214752 2966458 35768 35768 2930690 28633 28633 2959323 Part IV, Line 2b: Explanation of escrow account liability THE FOUNDATION SERVES AS THE ADMINISTRATIVE CENTER FOR THE DYSTONIA COALITION (THE COALITION), A NETWORK OF CLINICAL RESEARCH CENTERS WORKING TO ADVANCE THE UNDERSTANDING OF PRIMARY DYSTONIAS THAT IS SUPPORTED BY THE NATIONAL INSTITUTES OF HEALTH (NIH) NATIONAL CENTER FOR THE ADVANCEMENT OF TRANSLATIONAL SCIENCES. IN THIS ROLE, THE FOUNDATION WORKS WITH THE PROJECT'S PRINCIPAL INVESTIGATOR, DR HYDER A JINNAH OF EMORY UNIVERSITY, AND ALL COALITION MAIN CLINICAL PROJECT LEADERS TO SUPPORT THE ACTIVITIES OF THE COALITION, INCLUDING BUT NOT LIMITED TO: MEETING PLANNING; MANAGING PAYMENTS TO CLINICAL SITES PARTICIPATING IN THE COALITION'S MAIN CLINICAL PROJECTS AS WELL AS TO COALITION CONSULTANTS AND RECIPIENTS OF THE COALITION'S CAREER DEVELOPMENT AND PILOT PROJECTS AWARDS; MANAGING PRIVATE FUNDS GIVEN IN SUPPORT OF THE COALITION'S ACTIVITIES OR PROGRAMS; PARTICIPATING IN MONTHLY ADMINISTRATIVE PLANNING MEETINGS; PARTICIPATING IN THE COALITION'S EXECUTIVE COMMITTEE; AND PERFORMING OTHER DUTIES AS REQUESTED BY THE PRINCIPAL INVESTIGATOR AND/OR THE COALITION'S MAIN CLINICAL PROJECT LEADERS OR THE COALITION EXECUTIVE COMMITTEE. TOTAL RECEIPTS FOR THE COALITION WERE $416,077 IN 2024. TOTAL DISBURSEMENTS FOR THE COALITION WERE $115,084 IN 2024.THE DMRF ALSO SERVES AS THE ADMINISTRATIVE CENTER FOR OTHER DYSTONIA COMMUNITY PROJECTS SUCH AS THE GLOBAL DYSTONIA REGISTRY AND THE DYSTONIA BRAIN COLLECTIVE WHICH ARE SUPPORTED BY THE DMRF AND OTHER DYSTONIA PATIENT ADVOCACY GROUPS. TOTAL RECEIPTS FOR DYSTONIA COMMUNITY PROJECTS WERE $35,628 IN 2024. TOTAL DISBURSEMENTS FOR DYSTONIA COMMUNITY PROJECTS WERE $31,044 IN 2024. Part X : FIN48 Footnote The Foundation is a not-for-profit organization exempt from paying corporate federal income tax under Section 501(c)(3)of the Internal Revenue Code. It has been classified as an organization that is not a private foundation under the Internal Revenue Code and charitable contributions by donors are tax deductible.The Foundation files Form 990, Return of Organization Exempt from Income Tax with the Federal government. The Foundation also files Form AG990-IL, Illinois Charitable Organization Annual Report, with the Attorney General of the State of Illinois and Form 109, California Exempt Organization Business Income Tax Return, with the State of California. Management has determined that the Foundation has no income tax liability as of December 31, 2024. The Foundation has evaluated its tax positions and determined it has no uncertain tax positions at December 31, 2024. The Foundation's 2021-2024 tax years are open for examination by the IRS and State of Illinois and 2020-2024 for the State of California. Should the Foundations tax-exempt status be challenged in the future, all years since inception could be subject to review by the IRS. Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 CANADIAN REIMBURSEMENTS $35768 Part XII, Line 2d: Other expenses and losses per audited F/S CANADIAN REIMBURSEMENTS $35768 true EUROPE 0 0 MEDICAL RESEARCH 173169 NORTH AMERICA 0 0 MEDICAL RESEARCH 90545 Europe 0 0 Travel Reimbursement Pathogenesis workshop 16437 280151 280151 Europe MEDICAL RESEARCH 173169 EFT North America MEDICAL RESEARCH 90545 EFT 5 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US GRANTS AND RESEARCH FELLOWSHIPSGRANTS AND RESEARCH FELLOWSHIPS ARE INVESTIGATOR-INITIATED PROJECTS MONITORED BY THE DMRF'S GRANTS MANAGER AND CHIEF SCIENTIFIC ADVISOR, WITH REGULAR REPORTS PROVIDED TO THE DMRF SCIENCE COMMITTEE. ALL INVESTIGATORS ARE EXPECTED TO PUBLISH ALL MEANINGFUL RESEARCH RESULTS AND FINDINGS IN AN EXPEDITIOUS MANNER AND ARE REQUIRED TO SHARE ANY TOOLS AND MATERIALS DEVELOPED SO THAT OTHER RESEARCHERS CAN BENEFIT FROM THEIR RESEARCH. GRANT MAKERS ARE ENCOURAGED, WHEN APPROPRIATE, TO PUBLISH THEIR FINDINGS IN THE DYSTONIA JOURNAL WHICH IS A CENTRAL REPOSITORY FOR DYSTONIA RESEARCH MANAGED AND CURATED THROUGH THE DMRF AND ITS SCIENTIFIC EDITORS.GRANTS AND RESEARCH FELLOWSHIPS ARE AWARDED FOR ONE OR TWO YEAR TERMS. THE START DATE FOR GRANTS AND RESEARCH FELLOWSHIPS VARIES BY THE DATE OF THE CALL FOR APPLICATIONS, AND EACH APPLICATION'S DATE OF APPROVAL. PER THE GENERAL AWARD TERMS AND CONDITIONS, PAYMENTS ARE MADE TO THE RECIPIENT INSTITUTION IN EQUAL QUARTERLY INSTALLMENTS WITH THE FIRST PAYMENT BEING MADE AT THE TIME OF APPROVAL, UNLESS OTHERWISE REQUESTED BY THE INVESTIGATOR.FOR TWO YEAR AWARDS, RENEWAL FOR THE SECOND YEAR OF FUNDING IS APPROVED BY THE SCIENCE COMMITTEE AFTER A REVIEW OF THE PROGRESS TO DATE BY DMRF's CHIEF SCIENTIFIC ADVISOR AND SCIENTIFIC DIRECTOR AND FINAL APPROVAL BY THE DMRF BOARD OF DIRECTORS. IF APPROVED BY THE DMRF SCIENCE COMMITTEE, THE PAYMENT SCHEDULE FOR THE NEXT YEAR REMAINS THE SAME AS THE PRECEDING YEAR.INTERIM PROGRESS REPORTS INCLUDE INFORMATION ON UTILIZATION OF THE FUNDS RECEIVED TO DATE AND PROGRESS WITH REGARD TO THE SPECIFIC AIMS OUTLINED IN THE GRANT APPLICATION. PROGRESS REPORTS ARE DUE AS FOLLOWS:ONE YEAR AWARDS -5 1/2 MONTHS AND 9 MONTHS AFTER RECEIPT OF THE INITIAL DISBURSEMENT.TWO YEAR AWARDS -5 1/2 MONTHS, 9 MONTHS AND 18 MONTHS AFTER RECEIPT OF THE INITIAL DISBURSEMENT.FINAL REPORTS ARE DUE FIVE MONTHS AFTER THE FINAL DISBURSEMENT AND MUST INCLUDE THE FOLLOWING:1)DISCUSSION OF WHETHER THE PROJECT HAS ACHIEVED THE SPECIFIC MILESTONES, AIMS, AND OBJECTIVES OUTLINED IN THE ORIGINAL APPLICATION;2)INFORMATION ON HOW THE FUNDS HAVE BEEN SPENT;3)A PLAN FOR PUBLICATION OF RESULTS AND FINDINGS WITHIN ONE YEAR OF COMPLETING THE PROJECT; AND4)A LIST OF OTHER RESEARCH PROPOSALS EITHER SUBMITTED OR IN PREPARATION THAT HAVE RESULTED FROM THE PROJECT.CLINICAL TRAINING FELLOWSHIPSCLINICAL TRAINING FELLOWSHIPS ARE AWARDED TO CLINICAL FELLOWS TO HELP PREPARE THEM FOR A CLINICAL AND/OR CLINICAL RESEARCH CAREER IN MOVEMENT DISORDERS WITH AN EMPHASIS ON DYSTONIA INCLUDING: CLINICAL DIAGNOSIS AND EVALUATION, ONGOING PATIENT CARE AND MANAGEMENT, PHARMACOTHERAPY WITH A SPECIAL EMPHASIS ON NEUROTOXIN THERAPY, AND NEUROSURGICAL INTERVENTIONS, SUCH AS DEEP BRAIN STIMULATION. CLINICAL FELLOWSHIPS ARE AWARDED FOR TWO YEARs STARTING ON JULY 1. ANNUAL PAYMENTS ARE MADE TO THE RECIPIENT INSTUTUTION IN TWO EQUAL INSTALLMENTS ON OR ABOUT THE 1ST OF JULY AND 1ST OF JANUARY OF THE FOLLOWING YEAR.REPORTS ARE DUE 6 MONTHS AFTER RECEIPT OF THE FIRST AND SECOND DISBURSEMENT TO DETERMINE SECOND YEAR FUNDING AND AGAIN UPON C0MPLETION OF THE FELLOWSHIP. REPORTS MUST PROVIDE INFORMATION ABOUT THE RECIPIENT'S EXPERIENCE RELATED TO THE GOALS OF THE PROGRAM, INCLUDING THE PERCENTAGE OF TIME SPENT ON DYSTONIA, THE DIFFERENT FORMS OF DYSTONIA THAT THEY WERE EXPOSED TO IN THE CLINIC, AS WELL AS ATTENDANCE AT DYSTONIA-RELATED MEETINGS.CONTRACTS-(aka Sponsored research agreement)CONTRACTS (aka Sponsored research agreement)REPRESENT RESEARCH INITIATED BY THE DMRF AND CONDUCTED FOR SPECIFIC MILESTONE PROJECTS BY SELECTED INVESTIGATORS. CONTRACTS (aka Sponsored research agreement) ARE NEGOTIATED AND MONITORED BY THE DMRF'S CHIEF SCIENTIFIC ADVISOR AFTER BEING AUTHORIZED BY THE DMRF BOARD OF DIRECTORS. CONTRACT (aka Sponsored research agreement)PAYMENTS ARE MADE ACCORDING TO THE PAYMENT SCHEDULE OUTLINED IN THE RESEARCH SERVICES AGREEMENT, WITH THE FIRST DISBURSEMENT IMMEDIATELY UPON EXECUTION OF THE AGREEMENT. SUBSEQUENT CONTRACT (aka Sponsored research agreement) PAYMENTS ARE ISSUED AFTER APPROVAL FROM THE DMRF'S CHIEF SCIENTIFIC ADVISOR. MILESTONE REPORTS INCLUDE THE FOLLOWING:1)A SUMMARY OF WORK COMPLETED, INCLUDING A DESCRIPTION OF PROGRESS TOWARD COMPLETION OF RESEARCH MILESTONES;2)DISCLOSURE OF ALL RESULTS OBTAINED SINCE SUBMISSION OF THE PRIOR REPORT AND IDENTIFICATION OF RESULTS THAT MAY BE PATENTABLE OR OTHERWISE PROTECTABLE AS INTELLECTUAL PROPERTY;3)A SUMMARY OF WORK IN PROGRESS AND PLANS FOR THE UPCOMING REPORTING PERIOD; AND4)DISCLOSURE OF ANY NEW APPLICATIONS FOR COPYRIGHT OR PATENT PROTECTION FILED DURING THE REPORTING PERIOD OR INTENDED TO BE FILED IN THE UPCOMING REPORTING PERIOD.A FINAL REPORT IS DUE WITHIN 30-90 DAYS OF THE COMPLETION OF THE PROJECT, DEPENDING ON THE TERMS OF THE RESEARCH SERVICES AGREEMENT, AND INCLUDES A WRITTEN DESCRIPTION OF RESULTS AND AN OUTLINE OF POSSIBLE FUTURE STUDIES.If a grantee requests a no cost extension prior to completing their funded research because additional time is needed to successfully complete the work, the request is reviewed and a new deadline is agreed upon, if appropriate. false ZOO WALKS 259262 230017 29245 29245 1919 Event 35344 35344 7 127283 122029 5254 5254 421889 387390 34499 34499 34499 false false 49555 16100 true 1.00000 49555 16100 16100 33455 true false false false 1.00000 false false true Baylor College of Medicine One Baylor Plaza Houston TX 77030 741613878 66718 0 medical research Duke University Medical Ctr 324 Blackwell Durham NC 27701 560532129 155545 0 medical research Emory University 1599 Clifton Road NE 3rd Fl Atlanta GA 30322 580566256 50515 0 medical research Icahn Schl of Med at Mt Sinai One Gustave L Levy Place New York NY 10029 136171197 65000 0 medical research University of California SF 855 Folsom Street Box 0812 San Francisco CA 94143 946036493 99978 0 medical research VIRGINIA POLYTECHNIC 300 TURNER ST NW STE 4200 BLOCKSBURG VA 24061 546001758 90545 0 medical research Yale University PO Box 208239 New Haven CT 06520 060646973 181091 0 medical research 7 0 Grantmaker's Description of How Grants are Used DOMESTIC GRANTS AND FELLOWSHIPS ARE MONITORED FOLLOWING THE SAME PROCEDURES AS DESCRIBED IN SCHEDULE F, PART 1, LINE 2 FOR GRANTS FUNDED OUTSIDE THE US. X X X false false false false false false false false false JANET HIESHETTER Sec/EXEC DIR 183898 7356 8615 199869 X 4 95696 FMV false false false Form 990, Part VI, Section A, Line 2 ART KESSLER IS THE SON OF DENNIS AND BARBARA KESSLERDENNIS KESSLER IS THE SPOUSE OF BARBARA KESSLER AND FATHER OF ART KESSLERBARBARA KESSLER IS THE SPOUSE OF DENNIS KESSLER AND MOTHER OF ART KESSLERDAN LEWIS IS THE SON OF RICHARD AND ROSALIE LEWISROSALIE LEWIS IS THE SPOUSE OF RICHARD LEWIS AND MOTHER OF DAN LEWISRICHARD LEWIS IS THE SPOUSE OF ROSALIE LEWIS AND FATHER OF DAN LEWISMARK RUDOLPH IS THE SPOUSE OF DIANE RUDOLPHDIANE RUDOLPH IS THE SPOUSE OF MARK RUDOLPHERWIN JACKSON IS THE SPOUSE OF STEFANIE JACKSONSTEFANIE JACKSON IS THE SPOUSE OF ERWIN JACKSONMARC MILLER IS THE SPOUSE OF ROBIN MILLERROBIN MILLER IS THE SPOUSE OF MARC MILLERLIZ RAWSON IS THE DAUGHTER OF CAROLE RAWSONCAROLE RAWSON IS THE MOTHER OF LIZ RAWSONALLISON LONDON IS THE DAUGHTER OF RON HERSHRON HERSH IS THE FATHER OF ALLISON LONDON Form 990, Part VI, Section B, Line 11b THE BOARD OF DIRECTORS HAS DELEGATED THE REVIEW OF THE FORM 990 TO THE TAX REVIEW TASK FORCE, WHICH IS APPROVED BY THE BOARD OF DIRECTORS AND COMPRISED OF THE PRESIDENT, TREASURER AND TWO OTHER MEMBERS OF THE BOARD OF DIRECTORS. PRIOR TO THE SIGNING AND FILING OF THE FORM 990, MANAGEMENT, OUTSIDE CPA, THE TAX REVIEW TASK FORCE AND THE INDEPENDENT ACCOUNTANT WHO PREPARES THE FORM 990 MEET TO REVIEW THE ENTIRE FORM. UPON APPROVAL BY THE TAX REVIEW TASK FORCE, THE FORM 990 IS MADE AVAILABLE TO ALL MEMBERS OF THE BOARD OF DIRECTORS FOR REVIEW AND APPROVAL, AFTER WHICH IT IS SIGNED BY THE TREASURER AND FILED. Form 990, Part VI, Section B, Line 12c ON AN ANNUAL BASIS, DMRF REQUESTS WRITTEN STATEMENT OF ANY CONFLICTS FROM MEMBERS OF THE BOARD. THE BOARD PRESIDENT, ALONG WITH THE EXECUTIVE DIRECTOR, MONITOR AND REPORT POTENTIAL CONFLICTS TO THE CHAIR OF THE AUDIT COMMITTEE. ANY CONFLICTS THAT ARE DETERMINED TO EXIST ARE REPORTED TO THE BOARD AND DEALT WITH ACCORDINGLY. Form 990, Part VI, Section B, Line 15a ANNUALLY, THE DMRF BOARD PRESIDENT CONSULTS WITH THE BOARD OF DIRECTORS REGARDING THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AND PREPARES A WRITTEN PERFORMANCE EVALUATION. THE BOARD PRESIDENT, AFTER CONSULTATION WITH THE BOARD, DETERMINES SALARY ACTION, IF ANY, AND MEETS WITH THE EXECUTIVE DIRECTOR TO DISCUSS THE PERFORMANCE EVALUATION. COMPARATIVE SALARY INFORMATION IS OBTAINED ABOUT ORGANIZATIONS OF SIMILAR SCOPE AND SIZE FROM THE ASSOCIATION FORUM OF CHICAGOLAND AND THROUGH OTHER PUBLICLY AVAILABLE DOCUMENTS. Form 990, Part VI, Section C, Line 19 DMRF'S FORM 990, AUDITED FINANCIAL STATEMENTS, THE ANNUAL REPORT, AND THE BOARD APPROVED ANNUAL OPERATING PLAN ARE AVAILABLE ON THE FOUNDATION'S WEBSITE. CONFLICT OF INTEREST, GOVERNING DOCUMENTS AND POLICIES ARE AVAILABLE UPON REQUEST.