2013-08-09T11:27:42-05:00 2013-01-31 410887288 BOULAY HEUTMAKER ZIBELL & CO PLLP 7500 FLYING CLOUD DRIVE 800 MINNEAPOLIS MN 55344 990 2012-02-01 411756085 THE ALS ASSOCIATION MINNESOTA NORTH DAKOTA SOUTH DAKOTA CHAPTER AMYO 6126720484 333 NORTH WASHINGTON AVE NO 105 MINNEAPOLIS MN 55401 JENNIFER HJELLE 6126720484 2013-08-08 1 MARK J DENUCCI P00185624 9528939320 2013-08-08 2012 2016-02-24 21:20:13Z ALS ASSOCIATION MNNDSD CHAPTER JENNIFER HJELLE 333 NORTH WASHINGTON AVE NO 105 MINNEAPOLIS MN 55401 3968515 0 4119 X WWW.ALSMN.ORG X 1993 MN TO PROVIDE INFORMATION AND ASSISTANCE TO ALS PATIENTS AND THEIR FAMILIES. 18 18 19 1054 0 0 2768735 3541596 0 0 5492 2288 39804 113967 2814031 3657851 0 0 0 0 983068 1051942 0 9019 414175 2027807 2039183 3010875 3100144 -196844 557707 1868438 2046345 711553 331753 1156885 1714592 X UNTIL THERE IS A CURE, EMPOWER PEOPLE WITH LOU GEHRIG'S DISEASE AND THEIR FAMILIES TO LIVE FULLER LIVES BY PROVIDING THEM WITH COMPASSIONATE CARE AND SUPPORT, WHILE CONTRIBUTING TO THE FIGHT TO TREAT AND CURE ALS THROUGH GLOBAL RESEARCH AND ADVOCACY. 0 0 2111940 PATIENT AND COMMUNITY SERVICES - HELPING PEOPLE WITH ALS AND THEIR FAMILIES LIVE AS FULL A LIFE AS POSSIBLE THROUGH DIRECT PATIENT PROGRAMS (SEE SCHEDULE 0 FOR DETAIL), SUPPORT GROUPS, PHONE SUPPORT, AND REFERRALS. 253998 0 PUBLIC AWARENESS - EDUCATE AND INFORM THE PUBLIC ABOUT THE NATURE OF ALS THROUGH VARIOUS MAILINGS THROUGHOUT THE YEAR. 83638 0 RESEARCH: THE ALS ASSOCIATION, MINNESOTA, NORTH DAKOTA, SOUTH DAKOTA CHAPTER IS AN AFFILIATE OF THE NATIONAL ALS ASSOCIATION. EACH YEAR SINCE ITS FOUNDING IN 1985, THE NATIONAL ALS ASSOCIATION HAS INCREASED ITS INVESTMENT IN RESEARCH GRANTS. THE ALS ASSOCIATION HAS INVESTED $76 MILLION IN THE QUEST TO UNLOCK THE MYSTERIES OF ALS. IN THE PAST 20 YEARS THE MINNESOTA, NORTH DAKOTA, SOUTH DAKOTA CHAPTER HAS HELPED RAISE MORE THAN $2.5 MILLION FOR ALS RESEARCH.THE ALS ASSOCIATION FUNDS MORE ALS RESEARCH THAN ANY OTHER ORGANIZATION AND ITS RESEARCH ENTERPRISE IS RECOGNIZED IN THE ALS COMMUNITY FOR ITS SCOPE AND DIVERSITY. THE ASSOCIATION IS CURRENTLY OVERSEEING APPROXIMATELY 90 DIFFERENT RESEARCH PROJECTS COVERING EVERY HYPOTHESIS THAT NOW EXISTS ABOUT THE PATHOGENESIS OF THIS DISEASE. 2449576 1 0 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 14 0 19 1 0 0 0 0 1 1 1 1 0 0 0 0 X 18 18 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 MN X X JENNIFER HJELLE 6126720484 333 WASHINGTON AVE N STE 105 MINNEAPOLIS MN 55401 X AMY BRACHIO 2.00 X X 0 0 0 JOE DRISCOLL 2.00 X X 0 0 0 PHILIP ALBERT 2.00 X X 0 0 0 AUSTIN CAVES 1.00 X 0 0 0 KAREN DAHLEN 1.00 X 0 0 0 MICHELLE DOVE 1.00 X 0 0 0 ROCCO DRAGONETTI 1.00 X 0 0 0 DALE FREKING 1.00 X 0 0 0 SCOTT KIRKLAND 1.00 X 0 0 0 DAVID KOLQUIST NON-VOTING 1.00 X 0 0 0 DAVID LAMM 1.00 X 0 0 0 BILL MCCARTHY 1.00 X 0 0 0 MARY SUE OHLHAUSER 2.00 X X 0 0 0 BRENDA OLSON 1.00 X 0 0 0 MOJDEH POUL 1.00 X 0 0 0 KIRK PUMPHREY 1.00 X 0 0 0 MIKE RALSTON 1.00 X 0 0 0 GAYLE SIT 1.00 X 0 0 0 HOWARD ZACK 1.00 X 0 0 0 0 0 0 0 0 0 0 0 2132915 1408681 745425 3541596 2288 2288 290579 2132915 306320 -15741 -15741 134052 4344 129708 129708 3657851 0 0 116255 871369 519466 105549 246354 25995 15497 3149 7349 75167 44811 9105 21251 79411 47341 9619 22451 25881 9679 16202 9019 9019 19792 7193 12599 2652 2652 6153 4480 910 763 97323 58019 11789 27515 41223 19965 1669 19589 325440 259701 27662 38077 630042 621030 4506 4506 HRBEK SING PROGRAM 305514 305514 RESPITE CARE 258602 258602 LOAN CLOSET EQUIPMENT 217286 217286 BANK CHARGES 27073 27073 82202 60992 6561 14649 3100144 2449576 236393 414175 83151 181836 738144 806789 73512 49289 2837 15325 2778620 1789531 965660 989089 5134 4017 1868438 2046345 94052 131235 472210 28390 145291 172128 711553 331753 X 1060003 1665303 96882 49289 1156885 1714592 1868438 2046345 557707 0 X 0 1 X 1 0 X 2549551 2593332 2520005 2768735 3541596 13973219 2549551 2593332 2520005 2768735 3541596 13973219 19713 13953506 12260 9979 11133 5492 2288 41152 14014371 1289411 0.99570 0.99160 X 4257 4257 2770447 2774704 288735 72184 0 0 268370 275856 286548 288735 1119509 1679264 2298 3432 5089 4257 15076 67093 68964 71637 72184 279878 419817 2778620 1789531 989089 989089 DUE TO NATIONAL ASSOCIATION 150988 DEFERRED RENT 2893 CAPITAL LEASE OBLIGATION 18247 172128 X 3851641 193790 193790 3657851 0 3657851 3293934 193790 193790 3100144 0 3100144 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: THE ORGANIZATION FOLLOWS GUIDANCE FOR ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES AND HAS EVALUATED WHETHER THEY HAVE ANY SIGNIFICANT TAX UNCERTAINTIES THAT WOULD REQUIRE RECOGNITION OR DISCLOSURE. PRIMARILY DUE TO THE EXEMPT STATUS, THE ORGANIZATION DOES NOT HAVE ANY SIGNIFICANT TAX UNCERTAINTIES THAT WOULD REQUIRE RECOGNITION OR DISCLOSURE. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES 193,790. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES 193,790. X X X X X X 1 DAVID TELSCHOW 8515 153RD BAY SAVAGE MN 55378 SEE SCHEDULE O 0 108090 21618 86472 108090 21618 86472 MN BLACK WOODS BLIZZARD 1274124 1136866 137258 140206 WALK TO DEFEAT ALS 744305 744305 75687 6 405065 251744 153321 90427 2423494 2132915 290579 306320 306320 -15741 134052 4344 0 134052 4344 4344 129708 MN 1 0 0 0 1.00000 JENNIFER HJELLE 333 NORTH WASHINGTON AVENUE SUITE 1 MINNEAPOLIS MN 55401 0 JENNIFER HJELLE RECORD KEEPING, MONEY COUNTING, AND BANK DEPOSITS FOR RAFFLES USED FOR FUNDRAISING PURPOSES 0 X MEDICAL EQUIPMENT 121 745425 VALUATION 0 1 0 DURING THE FISCAL YEAR, THE ORGANIZATION CANCELLED SUPPORT GROUPS IN MONTEVIDEO, MINNESOTA AND IN BEREAVEMENT AND BISMARCK, NORTH DAKOTA. DIRECT PATIENT PROGRAMS FORM 990, PART III, LINE 4A ALS AND THE ALS ASSOCIATION, MINNESOTA, NORTH DAKOTA, SOUTH DAKOTA CHAPTER AMYOTROPHIC LATERAL SCLEROSIS (ALS), MORE COMMONLY REFERRED TO AS LOU GEHRIGS DISEASE, IS A DEGENERATIVE DISEASE OF THE CENTRAL NERVOUS SYSTEM, CHARACTERIZED BY THE DEATH OF THE MOTOR NEURONS (SPECIFIC NERVE CELLS). ALS RESULTS IN GRADUAL, PROGRESSIVE WEAKNESS AND WASTING AWAY OF VOLUNTARY MUSCLES, OFTEN LEADING TO TOTAL PARALYSIS. THE LIFE EXPECTANCY OF A PERSON WITH ALS IS USUALLY TWO TO FIVE YEARS FROM TIME OF DIAGNOSIS. WITH RECENT ADVANCES IN RESEARCH AND IMPROVED MEDICAL CARE, MANY PATIENTS ARE LIVING LONGER AND MORE PRODUCTIVE LIVES. HALF OF ALL THOSE AFFECTED MAY LIVE AT LEAST THREE YEARS OR MORE AFTER DIAGNOSIS. ABOUT 20 PERCENT LIVE FIVE YEARS OR MORE, AND UP TO TEN PERCENT WILL SURVIVE MORE THAN TEN YEARS. ALS OCCURS THROUGHOUT THE WORLD WITH NO RACIAL, ETHNIC, OR SOCIOECONOMIC BOUNDARIES. ALS CAN STRIKE ANYONE. MOST PEOPLE WHO DEVELOP ALS ARE BETWEEN THE AGES OF 40 AND 70, WITH AN AVERAGE AGE OF 55 AT THE TIME OF DIAGNOSIS. HOWEVER, PEOPLE AS YOUNG AS 17 AND PEOPLE IN THEIR 90'S HAVE BEEN DIAGNOSED WITH ALS. EVERY WEEK AN AVERAGE OF TWO MINNESOTANS ARE DIAGNOSED WITH ALS AND TWO SUCCUMB TO THE DISEASE. THERE ARE APPROXIMATELY 400 PEOPLE LIVING WITH ALS IN MINNESOTA AT ANY ONE TIME. IN NORTH DAKOTA THERE ARE APPROXIMATELY 47 PEOPLE LIVING WITH ALS AT ANY ONE TIME. ON AVERAGE EACH MONTH, ONE PERSON IS DIAGNOSED WITH ALS AND ONE PERSON DIES FROM THE DISEASE. IN SOUTH DAKOTA THERE ARE APPROXIMATELY 56 PEOPLE LIVING WITH ALS AT ANY ONE TIME. ON AVERAGE EACH MONTH, 1.5 PEOPLE ARE DIAGNOSED WITH ALS AND THAT SAME NUMBER DIE FROM THE DISEASE. CHAPTER PROGRAMS INCLUDE: 1. HRBEK-SING COMMUNICATION AND ASSISTIVE DEVICE PROGRAM: THIS PROGRAM ALLOWS INDIVIDUALS WHO HAVE LOST THEIR ABILITY TO VERBALLY COMMUNICATE DUE TO ALS, TO BORROW COMMUNICATION DEVICES THAT ARE NOT COVERED BY MEDICAL INSURANCE. THE PROGRAM ALSO PROVIDES ELECTRONIC AIDS TO DAILY LIVING AND COMPUTER ACCESS TECHNOLOGIES TO THESE INDIVIDUALS SO THEY CAN MAINTAIN THEIR INDEPENDENCE AS THEIR DISEASE PROGRESSES. LAST FISCAL YEAR 210 PEOPLE USED THIS PROGRAM AND OVER 1,200 PIECES OF EQUIPMENT WENT IN AND OUT OF THE LOAN CLOSET. 2. JACK NORTON FAMILY RESPITE PROGRAM: THIS PROGRAM PROVIDES SHORT PERIODS OF RESPITE FROM THE STRESSFUL RESPONSIBILITY OF PROVIDING AROUND-THE-CLOCK CARE FOR A LOVED ONE LIVING WITH ALS. SKILLED HOMECARE PERSONNEL COME INTO THE HOME TO CARE FOR THE PERSON WITH ALS, THEREBY ALLOWING THE FULL-TIME PRIMARY FAMILY CAREGIVER TIME TO RELAX, DO ERRANDS, KEEP APPOINTMENTS OR VISIT WITH FRIENDS. THE CHAPTER PROVIDES UP TO 18 HOURS OF RESPITE CARE EACH MONTH TO FAMILIES THAT QUALIFY FOR THIS PROGRAM. LAST YEAR THE CHAPTER PAID FOR OVER 9,508 RESPITE HOURS FOR 100 FAMILIES. 3. DURABLE MEDICAL EQUIPMENT LOAN POOL: THE EQUIPMENT LOAN POOL PROVIDES DURABLE MEDICAL EQUIPMENT TO PERSONS WITH ALS TO HELP THEM MAINTAIN THEIR INDEPENDENCE AND PHYSICAL SAFETY. THE LOAN POOL HAS EQUIPMENT DONATED BY PATIENTS AND THEIR FAMILIES, AND IS HOUSED IN MULTIPLE LOCATIONS THROUGHOUT THE CHAPTER SERVICE AREA. EXAMPLES OF EQUIPMENT ARE: HOSPITAL BEDS, WHEELCHAIRS, WALKERS, BATHROOM EQUIPMENT, MATTRESSES, ETC. LAST YEAR 336 PEOPLE UTILIZED THIS PROGRAM. AN AVERAGE OF 250 TO 300 ITEMS ROTATED THROUGH THE POOL EACH MONTH, WITH MORE THAN 2500 ITEMS GOING IN AND OUT OF 9 DIFFERENT DURABLE MEDICAL EQUIPMENT LOAN POOL LOCATIONS. 4. OCCUPATIONAL THERAPY(OT)/PHYSICAL THERAPY (PT) PROGRAM: THIS PROGRAM PROVIDES INDIVIDUALS WITH ALS THE SERVICES OF ALS-EXPERIENCED OT/PTS FOR HOME EVALUATIONS, EQUIPMENT ASSESSMENT, PROPER TRANSFER TECHNIQUES, MOBILITY, ACTIVITIES OF DAILY LIVING, TRAINING IN RANGE-OF-MOTION, STRETCHING EXERCISES AND THE TEACHING OF THERAPEUTIC PROCEDURES TO CARE PROVIDERS OF PERSONS WITH ALS. LAST YEAR 43 PEOPLE RECEIVED HOME VISITS, NOT PAID FOR BY INSURANCE, THROUGH THIS PROGRAM. 5. SUPPORT GROUPS: THERE ARE SEVERAL MONTHLY OR QUARTERLY ALS SUPPORT GROUPS LOCATED THROUGHOUT THE CHAPTER SERVICE AREA. SOME OF THE SUPPORT GROUPS HAVE EDUCATIONAL SPEAKERS AND SOME BREAK INTO SMALLER GROUPS, SO THE NEEDS OF ALL THOSE WHO ATTEND CAN BE ADDRESSED. MORE THAN 525 DIFFERENT PEOPLE PARTICIPATED IN EIGHT DIFFERENT SUPPORT GROUPS LOCATED THROUGHOUT THE SERVICE AREA. THE CHAPTER ALSO HOSTS A BEREAVEMENT GROUP FOR THOSE WHO HAVE LOST A LOVED ONE TO ALS. 6. VOLUNTEER PROGRAM: THE PURPOSE OF THE VOLUNTEER PROGRAM IS TO INCREASE THE QUALITY OF LIFE FOR THOSE WITH ALS BY FREEING UP THEIR TIME AND ENERGY FOR MORE ENJOYABLE THINGS. VOLUNTEERS HUMBLY PERFORM DAILY TASKS OF LIVING LIKE CLEANING, RUNNING ERRANDS, MAKING MEALS, AND MUCH MORE. LAST YEAR, VOLUNTEERS LIFTED BURDENS IN THE LIVES OF 97 PEOPLE WITH ALS AND THEIR FAMILIES. 7. ADVOCACY: THE CHAPTER WORKS TO IMPROVE VARIOUS SITUATIONS WHICH PEOPLE WITH ALS AND THEIR FAMILIES FACE IN THEIR DAILY STRUGGLE WITH ALS. THESE INCLUDE IDENTIFYING AND ADDRESSING CHALLENGES AND OPPORTUNITIES ON LEGISLATIVE AND ADMINISTRATIVE LEVELS AND SHAPING POLICIES AND ACTIONS IN THE INTEREST OF ALL CONSTITUENTS. 8. OTHER SERVICES: THE CHAPTER ALSO EMPLOYS A NURSE, SOCIAL WORKER, OCCUPATIONAL THERAPISTS AND A CHAPLAIN TO HELP EACH FAMILY THROUGH THE PROGRESSION OF ALS. THEY ARE AVAILABLE FOR PATIENT AND FAMILY CONSULTATION AND SUPPORT, ADVANCE CARE DIRECTIVES, AND PROVIDE RESOURCE INFORMATION. IN ADDITION, THE CHAPTER HOUSES A LENDING LIBRARY, PUBLISHES A BI-MONTHLY NEWSLETTER, AND OFFERS A VARIETY OF INFORMATION ON THE WEBSITE: WWW.ALSMN.ORG. FORM 990, PART VI, SECTION B, LINE 11 THE FINANCE COMMITTEE REVIEWED THE 990 WITH THE TAX PREPARER. ANY QUESTIONS OR DISCREPANCIES ARE ADDRESSED WITH THE PREPARER BEFORE PRESENTING THE 990 TO THE GOVERNING BOARD. THE 990 IS THEN PRESENTED TO THE BOARD FOR FULL APPROVAL. FORM 990, PART VI, SECTION B, LINE 12C ALL BOARD MEMBERS ARE REQUIRED TO SIGN THIS FORM ON AN ANNUAL BASIS, AND THE EXECUTIVE DIRECTOR OVERSEES ANY CONFLICT OF INTERESTS. FORM 990, PART VI, SECTION B, LINE 15 A SELF-EVALUATION FORM IS FILLED OUT BY THE EXECUTIVE DIRECTOR. THE BOARD PRESIDENT OBTAINS FEEDBACK FROM THE STAFF AND THE BOARD AND THEN FILLS OUT A RESPONSE EVALUATION FORM. THE EVALUATIONS ARE THEN REVIEWED BY THE PRESIDENT AND THE EXECUTIVE DIRECTOR OF THE ORGANIZATION. THIS OCCURS ANNUALLY. ANY RAISES ARE DECIDED ON BY THE BOARD OF DIRECTORS AT THIS TIME. FOR OTHER KEY OFFICERS AND EMPLOYEES, THE EXECUTIVE DIRECTOR REVIEWS THE VP OF CARE SERVICES, VP OF DEVELOPMENT AND VP OF FINANCE AND GETS INPUT FROM THE STAFF AND BOARD OF DIRECTORS AS PART OF THIS PROCESS. RAISES ARE REVIEWED ANNUALLY IN CONJUNCTION WITH THE PREPARATION OF THE BUDGET NEAR THE CALENDAR YEAR END. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS INCLUDING CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE MADE AVAILABLE UPON REQUEST. ACTIVITY OF PROFESSIONAL FUNDRAISER SCHEDULE G, PART I, LINE 2(B)(II) TO COORDINATE THE SOLICITATION AND COMMUNICATION WITH MAJOR SPONSORS AND DONORS AS WELL AS MAINTAING RELATIONSHIPS WITH SUCH DONORS. IN ADDITION, TO DEVELOP AND IMPLEMENT NEW FUNDRAISING IDEAS AND ASSIST WITH THE MARKETING OF MATERIALS RELATED TO FUNDRAISING.