2023-08-23T13:22:47-07:00 2022-12-31 362716239 BARNES GIVENS & BARNES 200 E Evergreen Ave STE 117 Mount Prospect IL 60056 990 2022-01-01 953378526 DYSTONIA MEDICAL RESEARCH FOUNDATION DYST 3127550198 ONE EAST WACKER DRIVE 1730 CHICAGO IL 60601 JOHN DOWNEY Treasurer 2023-08-23 true JOHN DOWNEY 999009999 true William J Barnes P00399658 2247642442 2 AAL1 IAL1 FAL1 2022 2023-04-26 12:10:37Z JANET HIESHETTER ONE EAST WACKER DRIVE 1730 CHICAGO IL 606011980 3797652 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 9 725 0 2761025 2391324 0 133597 133079 48112 44707 2942734 2569110 909743 826698 0 855321 839563 0 244606 707460 830030 2472524 2496291 470210 72819 6898919 6256038 1512549 1459885 5386370 4796153 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 WHO ARE UNABLE TO ATTEND MEETINGS AND FORUMS. false false 1310100 826698 SCIENCE-INCLUDES:ISSUING 4 REQUESTS FOR APPLICATIONS FOR SCIENTIFIC RESEARCH, MANAGING THE PEER REVIEW PROCESS OF 51 SUBMITTED GRANT RESEARCH FELLOWSHIP AND CLINICAL FELLOWSHIP APPLICATIONS, SELECTING, FUNDING AND MANAGING 7 RESEARCH GRANTS, 4 RESEARCH FELLOWSHIPS, 1 CLINICAL FELLOWSHIP, 1 RESEARCH CONTRACT AND COFUNDING 2 PROJECT PILOT AWARDS WITH THE DYSTONIA COALITION, 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 FOR SAMUEL BELZBERG 6TH INTERNATIONAL DYSTONIA SYMPOSIUM IN 2023; 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 PARKINSON'S AND MOVEMENT DISORDER SOCIETY'S CONGRESS; AND NEUROTOXIN ASSOCIATION MEETING.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 THIRTEENTH YEAR WITH NO COMPENSATION AS AN 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 $611,705 RESTRICTED FOR DYSTONIA COALITION WORK NOT INCLUDED IN THE FOUNDATION'S REVENUES AND EXPENSES.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. Because of the global pandemic,the 6th Samuel Belzberg International Dystonia Symposium was rescheduled from June 2020 to June 2023. The rescheduling HAS BEEN managed by the DMRF and planning for the 2023 program continues. 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. 457154 AWARENESS AND EDUCATION-INCLUDES:PUBLISHING 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 50,000 PATIENTS, FAMILIES, AND INTERESTED PERSONS TO INFORM THEM OF THE LATEST RESEARCH AND FOUNDATION ACTIVITIES; ANDCREATING AND DISSEMINATING OVER TWENTY-SIX 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, FIVE 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. 146924 MEMBERSHIP AND SUPPORT-INCLUDES:PLANNING AND SUPPORTING VIRTUAL PATIENT SYMPOSIA AND 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; ANDDEVELOPING 53 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 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. 119 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. 76067 1990245 true true false true false false false false true false true false false true true true true false false true true true false false true false false true false true false false false false false false false false true false false false false false false false false true 13 0 true 9 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 172893 0 26481 DEBORAH DURRER DIR DEVELOPMENT 38.00 0.00 95071 0 30944 JENNIFER MCNABOLA DIR FINANCE 30.00 0.00 100558 0 6166 JESSICA FEELEY DIR COMMUN & EDUC 38.00 0.00 82776 0 11405 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 Pamela Sloate 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 DONNA DRISCOLL 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 451298 74996 2 false true false JAN TELLER MA PHD NIP 7773338319 LUCZNIKOWIO NIEMCZ PL 86-032 CHIEF SCI ADVISOR 142440 1 7377 428416 1955531 115036 2391324 0 114512 114512 0 0 0 1181288 1162721 18567 18567 18567 65821 428416 65821 0 0 0 MERCHANDISE SALES 900099 3679 3679 Unclaimed property recovery 900099 41028 41028 44707 2569110 63274 114512 714648 714648 0 112050 112050 0 199374 132153 36903 30318 0 520062 342690 101303 76069 18752 12356 3653 2743 50883 35575 4826 10482 50492 33272 9835 7385 0 0 29320 3580 24923 817 50371 50371 0 26136 26136 178064 175564 2500 0 0 75701 54447 7442 13812 0 89936 61973 14704 13259 32644 24191 141 8312 0 17107 17107 0 0 7865 5310 1343 1212 11892 7826 1980 2086 Printing and Publications 80551 46863 33688 Postage and Shipping 70315 59028 2328 8959 Miscellaneous 56176 10631 18645 26900 Supplies 49989 44418 2929 2642 53963 46192 4349 3422 2496291 1990245 261440 244606 1017081 657300 1023366 1065407 0 35997 73439 0 0 0 0 0 42139 32817 11576 9322 4737430 4130227 0 0 0 73469 320343 6898919 6256038 61480 74578 817754 527975 210500 168573 318053 378855 104762 309904 1512549 1459885 X 3150601 2642291 2235769 2153862 5386370 4796153 6898919 6256038 72819 -716912 53876 X false true X true false X 2396639 2645490 2419076 2761025 2391324 12613554 0 0 2396639 2645490 2419076 2761025 2391324 12613554 2406114 10207440 119673 123212 114134 99596 114512 571127 0 4834 3849 3779 48112 44707 105281 13289962 0.76810 0.75760 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false true true false true false false true 20148 false false 20148 false false Part II-B, Line 1i - Other Activities Description See schedule O Part IV - Additional Information false true X 34982 26107 8875 7157 6710 447 9322 Financing lease right-of-use asset 13296 Operating lease right-of-use asset 249856 Other Assets 57191 320343 Financing lease liability 13296 Operating lease liability 296608 309904 X 1862737 -716912 36675 -680237 2542974 26136 26136 2569110 2506830 36675 36675 2470155 26136 26136 2496291 Part IV, Line 2b: Explanation of escrow account liability THE FOUNDATION SERVES AS AN 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 $271,152 IN 2022. TOTAL DISBURSEMENTS FOR THE COALITION WERE $214,850 IN 2022.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 $22,500 IN 2022. TOTAL DISBURSEMENTS FOR DYSTONIA COMMUNITY PROJECTS WERE $18,000 IN 2022. 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, 2022. The Foundation has evaluated its tax positions and determined it has no uncertain tax positions at December 31, 2022. The Foundation's 2019-2022 tax years are open for examination by the IRS and State of Illinois and 2018-2022 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 $36675 Part XII, Line 2d: Other expenses and losses per audited F/S CANADIAN REIMBURSEMENTS $36675 true EUROPE 0 0 MEDICAL RESEARCH 89038 AUSTRALIA 0 0 MEDICAL RESEARCH 11506 NORTH AMERICA 0 0 MEDICAL RESEARCH 11506 112050 112050 MEDICAL RESEARCH 112050 EFT 1 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 THE CHIEF SCIENTIFIC ADVISOR AND SCIENTIFIC DIRECTOR AND FINAL APPROVAL BY THE DMRF'S BOARD OF DIRECTORS. IF APPROVED BY THE 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 SECOND YEAR 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 ONE YEAR STARTING, ON JULY 1. 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 DISBURSEMENT AND 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.CONTRACTSCONTRACTS REPRESENT RESEARCH INITIATED BY THE DMRF AND CONDUCTED FOR SPECIFIC MILESTONE PROJECTS BY SELECTED INVESTIGATORS. CONTRACTS ARE NEGOTIATED AND MONITORED BY THE DMRF'S CHIEF SCIENTIFIC ADVISOR AFTER BEING AUTHORIZED BY THE DMRF BOARD OF DIRECTORS. CONTRACT 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 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. false ZOO WALKS 341945 300680 41265 41265 basket bash 39813 25095 14718 14718 5 94435 85935 8500 8500 476193 411710 64483 64483 64483 true Baylor College of Medicine One Baylor Plaza Houston TX 77030 741613878 37968 0 medical research CASE WESTERN RESERVE 10900 EUCLID AVE CLEVELAND OH 44106 341018992 91756 0 medical research Cornell University PO Box 22 Ithaca NY 14851 150532082 30000 0 medical research Mass General Hospital 55 Fruit St Boston MA 02114 042697983 77563 0 medical research University of California SF 855 Folsom Street Box 0812 San Francisco CA 94143 946036493 217361 0 medical research UNIVERSITY OF FLORIDA PO BOX 115500 GAINESVILLE FL 32611 596002052 65000 0 medical research UNIVERSITY OF MICHIGAN 1241 E CATHERINE ST ANN ARBOR MI 48109 386006309 92045 0 medical research VIRGINIA COMMONWEALTH 800 E LEIGH ST RICHMOND VA 23284 546001758 79640 0 medical research Yale University PO Box 208239 New Haven CT 06520 060646973 24545 0 medical research 9 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 172893 7142 19339 199374 X 4 115036 false false false Form 990, Part III, Line 4d OTHER PROGRAM SERVICES 4: ADVOCACY INCLUDES: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 SIXTEEN 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. $22 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, MAINTAINS AN ADVOCACY WEBSITE, 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 FOR THE NATIONAL INSTITUTES OF HEALTH, ACCESS TO HEALTHCARE, AND APPROPRIATE, AFFORDABLE REIMBURSEMENT FOR DYSTONIA TREATMENTS. 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 MOTHER 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 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, 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. 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 THROUGH INFORMATION FROM THE ASSOCIATION FORUM OF CHICAGOLAND AND THROUGH OTHER PUBLICLY AVAILABLE DOCUMENTS. Form 990, Part VI, Section C, Line 19 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. Part VIII, 11a UNCLAIMED FUNDS The DMRF received proceeds of $41,028 in 2022 for unclaimed property, returned to the organization.