2015-07-23T15:50:44-05:00 2015-01-31 410887288 BOULAY PLLP 7500 FLYING CLOUD DRIVE 800 MINNEAPOLIS MN 55344 990 2014-02-01 411756085 THE ALS ASSOCIATION MINNESOTA NORTH DAKOTA SOUTH DAKOTA CHAPTER AMYO 6126720484 333 NORTH WASHINGTON AVE NO 105 MINNEAPOLIS MN 55401 JENNIFER HJELLE EXECUTIVE DIRECTOR 6126720484 2015-07-16 1 TARA M SCHINI P01714186 9528939320 2015-07-16 2014 2016-02-25 16:41:14Z ALS ASSOCIATION MNNDSD CHAPTER JENNIFER HJELLE 333 NORTH WASHINGTON AVE NO 105 MINNEAPOLIS MN 55401 5554788 0 4119 X WWW.ALSMN.ORG X 1993 MN TO PROVIDE INFORMATION AND ASSISTANCE TO PEOPLE WITH ALS AND THEIR FAMILIES. 19 19 23 664 0 0 3010655 5020296 0 0 1748 2994 67673 110048 3080076 5133338 0 0 0 0 1150400 1184592 0 0 477726 1951869 2385417 3102269 3570009 -22193 1563329 2057493 3592673 365094 336945 1692399 3255728 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 2002474 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. 650633 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 MORE THAN $99 MILLION IN THE QUEST TO UNLOCK THE MYSTERIES OF ALS. IN THE PAST 22 YEARS THE MINNESOTA, NORTH DAKOTA, SOUTH DAKOTA CHAPTER HAS HELPED RAISE MORE THAN $2.9 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 140 ACTIVE PROJECTS GLOBALLY. PROJECTS ARE MILESTONE DRIVEN, WHICH ENABLES THE ASSOCIATION TO REDIRECT DOLLARS WHEN THE SCIENCE DEMONSTRATES THAT ONE APPROACH IS NOT FEASIBLE, AND ANOTHER IS MORE PROMISING. 194766 PUBLIC AWARENESS - EDUCATE AND INFORM THE PUBLIC ABOUT THE NATURE OF ALS THROUGH ADVOCACY, NEWSLETTERS, SOCIAL MEDIA AND EVENTS. 2847873 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 18 0 23 1 0 0 0 0 1 1 1 1 0 0 0 0 X 19 19 0 0 1 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 MOJDEH POUL SECRETARY 2.00 X X 0 0 0 JOE DRISCOLL PRESIDENT 2.00 X X 0 0 0 PHILIP ALBERT TREASURER 2.00 X X 0 0 0 CLAY AHRENS BOARD MEMBER 1.00 X 0 0 0 ROCCO DRAGONETTI BOARD MEMBER 1.00 X 0 0 0 DALE FREKING BOARD MEMBER 1.00 X 0 0 0 SCOTT KIRKLAND BOARD MEMBER 1.00 X 0 0 0 DAVID LAMM BOARD MEMBER 1.00 X 0 0 0 BILL MCCARTHY BOARD MEMBER 1.00 X 0 0 0 BRENDA OLSON BOARD MEMBER 1.00 X 0 0 0 ALLEN GERTEN BOARD MEMBER 1.00 X 0 0 0 DEL GUST BOARD MEMBER 1.00 X 0 0 0 GAYLE SIT VICE PRESIDENT 2.00 X X 0 0 0 MARK BUERMANN BOARD MEMBER 1.00 X 0 0 0 KRISTI WAITE BOARD MEMBER 1.00 X 0 0 0 GRANT LANDER BOARD MEMBER 1.00 X 0 0 0 NANCY SACCO BOARD MEMBER 1.00 X 0 0 0 JORDAN SING BOARD MEMBER 1.00 X 0 0 0 JOHN STOCKMAN BOARD MEMBER 1.00 X 0 0 0 JENNIFER HJELLE EXECUTIVE DIRECTOR 40.00 X 106083 0 0 106083 0 0 1 0 0 0 0 2300481 2719815 596463 5020296 2994 2994 341504 2300481 409227 -67723 -67723 189994 12223 177771 177771 5133338 0 0 113042 990575 598968 113416 278191 28803 17416 3298 8089 72158 43631 8262 20265 93056 56269 10654 26133 19905 19905 9501 3659 5842 85 43 42 117112 70814 13408 32890 56506 26884 4968 24654 345692 276208 16593 52891 597852 590880 3486 3486 RESEARCH 530678 530678 RESPITE CARE 223467 223467 LOAN CLOSET EQUIPMENT 212054 212054 HRBEK SING PROGRAM 108354 108354 164211 88548 50420 25243 3570009 2847873 244410 477726 100794 115926 927595 2271204 29703 39482 20683 8494 2925528 1869198 974280 1056330 4438 101237 2057493 3592673 158985 246374 46275 4250 159834 86321 365094 336945 X 1662696 3216246 29703 39482 1692399 3255728 2057493 3592673 1563329 0 X X 0 1 X 1 0 X 2520005 2768735 3541596 3010655 5020296 16861287 2520005 2768735 3541596 3010655 5020296 16861287 38751 16822536 11133 5492 2288 1748 2994 23655 16884942 1367910 0.99630 0.99790 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 9666 9666 3214651 3224317 311216 77804 0 0 286548 288735 290778 311216 1177277 1765916 5089 4257 4874 9666 23886 71637 72184 72695 77804 294320 441480 2925528 1869198 1056330 1056330 DUE TO NATIONAL ASSOCIATION 74108 DEFERRED RENT 620 CAPITAL LEASE OBLIGATION 11593 86321 X 5444828 311490 311490 5133338 0 5133338 3881499 311490 311490 3570009 0 3570009 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 311,490. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES 311,490. WALK TO DEFEAT ALS 1239675 1239675 94387 BLACK WOODS BLIZZARD 850808 698842 151966 195737 6 551502 361964 189538 119103 2641985 2300481 341504 409227 409227 -67723 189994 12223 0 189994 12223 12223 177771 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 45 596463 VALUATION 0 1 0 FORM 990, PART III, LINE 4A 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 PEOPLE WITH ALS 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 IS DIAGNOSED WITH ALS AND TWO SUCCUMB TO THE DISEASE. ON AVERAGE IN NORTH DAKOTA, ONE PERSON IS DIAGNOSED EACH MONTH AND ONE PERSON DIES FROM ALS. ON AVERAGE IN SOUTH DAKOTA, ONE TO TWO PEOPLE ARE DIAGNOSED EACH MONTH AND ONE TO TWO PEOPLE DIE OF ALS EACH MONTH. AT ANY GIVEN TIME, THERE ARE APPROXIMATELY 400-450 PEOPLE LIVING WITH ALS IN MINNESOTA, NORTH DAKOTA AND SOUTH DAKOTA. CHAPTER PROGRAMS INCLUDE: 1. HRBEK-SING COMMUNICATION AND ASSISTIVE DEVICE PROGRAM: THIS PROGRAM ASSISTS INDIVIDUALS WITH ALS WHO HAVE LOST THEIR ABILITY TO VERBALLY COMMUNICATE AND/OR WHO ARE HAVING DIFFICULTY USING A COMPUTER AND OTHER ELECTRONIC DEVICES IN THEIR HOME. THE PROGRAM LOANS DEVICES AND EQUIPMENT THAT ARE NOT COVERED BY MEDICAL INSURANCE AND ARE AVAILABLE IN THE INVENTORY. LAST FISCAL YEAR 215 PEOPLE USED THIS PROGRAM AND OVER 900 PIECES OF EQUIPMENT WENT IN AND OUT OF THE LOAN CLOSET. 2. JACK NORTON FAMILY RESPITE PROGRAM: THIS PROGRAM PROVIDES MUCH NEEDED RESPITE TO A LIVE-IN FAMILY CAREGIVER OF A PERSON WITH ALS. SKILLED HOMECARE PERSONNEL COME INTO THE HOME TO CARE FOR THE PERSON WITH ALS ALLOWING THE FAMILY CAREGIVER TIME TO RELAX, DO ERRANDS, KEEP APPOINTMENTS OR VISIT WITH FRIENDS. THE CHAPTER PROVIDES UP TO 18 HOURS OF RESPITE EACH MONTH TO FAMILIES THAT QUALIFY FOR THIS PROGRAM. LAST YEAR THE CHAPTER PAID FOR 8,071 RESPITE HOURS FOR 95 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 INDIVIDUALS AND THEIR FAMILIES, AND IS HOUSED IN MULTIPLE LOCATIONS THROUGHOUT THE CHAPTER'S SERVICE AREA. EXAMPLES OF EQUIPMENT ARE: HOSPITAL BEDS, WHEELCHAIRS, WALKERS, BATHROOM EQUIPMENT, MATTRESSES, ETC. LAST YEAR 350 PEOPLE UTILIZED THIS PROGRAM. MORE THAN 3,000 PIECES OF EQUIPMENT WENT IN AND OUT OF THE CLOSET DURING THIS TIME. 4. OCCUPATIONAL THERAPY(OT)/PHYSICAL THERAPY (PT) PROGRAM: THIS PROGRAM PROVIDES INDIVIDUALS WITH ALS THE SERVICES OF ALS-EXPERIENCED OT/PT'S FOR HOME EVALUATIONS, EQUIPMENT ASSESSMENT, PROPER TRANSFER TECHNIQUES, AND TRAINING IN RANGE-OF-MOTION AND STRETCHING EXERCISES TO CARE PROVIDERS OF PERSONS WITH ALS. LAST YEAR 44 PEOPLE RECEIVED HOME VISITS THROUGH THIS PROGRAM. 5. SUPPORT GROUPS: THERE ARE MONTHLY ALS-SPECIFIC SUPPORT GROUPS LOCATED THROUGHOUT OUR SERVICE AREA, INCLUDING AN ONLINE GROUP FOR INDIVIDUALS WITH ALS WHO ARE UNABLE TO TRAVEL TO A MEETING. 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. 6. FAMILY ASSISTANCE PROGRAM: THE PURPOSE OF THIS 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 42 PEOPLE WITH ALS AND THEIR FAMILIES. 7. ADVOCACY: THE CHAPTER WORKS, ON A NATIONAL AND STATE LEVEL, TO IMPROVE VARIOUS SITUATIONS WHICH PEOPLE WITH ALS AND THEIR FAMILIES FACE IN THEIR DAILY STRUGGLE WITH THE DISEASE. THESE ADVOCACY EFFORTS 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'S CARE SERVICES STAFF PROVIDES EDUCATION AND INFORMATION ABOUT ALS TO PERSONS WITH THE DISEASE, THEIR FAMILIES, FRIENDS AND HEALTH CARE PROFESSIONALS. THE CARE SERVICES STAFF CONSISTS OF PROFESSIONALS FROM NURSING, SOCIAL WORK, OCCUPATIONAL THERAPY AND CHAPLAINCY. THE CARE SERVICES STAFF ARE AVAILABLE TO INDIVIDUALS WITH ALS AND THEIR FAMILIES FOR CONSULTATION AND SUPPORT, ADVANCE CARE DIRECTIVES, AND TO PROVIDE RESOURCE INFORMATION. IN ADDITION, THE CHAPTER HOUSES A LENDING LIBRARY AND PUBLISHES A MONTHLY ELECTRONIC NEWSLETTER. FORM 990, PART VI, SECTION A, LINE 4 CHANGES WERE MADE TO THE BY-LAWS TO REVISE BOARD TERMS AND TO BETTER DEFINE THE COMMITTEE STRUCTURE. BOARD MEMBERS CAN NOW SERVE UP TO 3, 3-YEAR TERMS INSTEAD OF 2, 3-YEAR TERMS WITH OFFICER EXCEPTIONS. THE COMMITTEE STRUCTURE WAS UPDATED TO REFLECT THE NEEDS OF THE ORGANIZATION AND TO CLEARLY DEFINE THE DUTIES OF THOSE COMMITTEES. THE UPDATED BY-LAWS ALSO CLEARLY DEFINE THE PROCESS FOR OFFICER ELECTIONS AND VACANCIES. 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 HUMAN RESOURCES COMMITTEE OR 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 (WITH INPUT FROM THE FINANCE COMMITTEE). FOR OTHER KEY OFFICERS AND EMPLOYEES, THE EXECUTIVE DIRECTOR REVIEWS THE VP OF CARE SERVICES AND THE VP OF DEVELOPMENT ANNUALLY WITH INPUT FROM THE STAFF AND BOARD OF DIRECTORS. 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. FORM 990, PART XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR