2014-07-14T11:59:47-05:00 2014-01-31 410887288 BOULAY PLLP 7500 FLYING CLOUD DRIVE 800 MINNEAPOLIS MN 55344 990 2013-02-01 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 2014-07-09 1 TARA M SCHINI P01714186 9528939320 2014-07-09 2013 2015-11-30 17:44:51Z ALS ASSOCIATION MNNDSD CHAPTER JENNIFER HJELLE 333 NORTH WASHINGTON AVE NO 105 MINNEAPOLIS MN 55401 3404572 0 4119 X WWW.ALSMN.ORG X 1993 MN TO PROVIDE INFORMATION AND ASSISTANCE TO PEOPLE WITH ALS AND THEIR FAMILIES. 14 14 21 547 0 0 3541596 3010655 0 0 2288 1748 113967 67673 3657851 3080076 0 0 0 0 1051942 1150400 9019 0 456837 2039183 1951869 3100144 3102269 557707 -22193 2046345 2057493 331753 365094 1714592 1692399 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 2091597 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. 233545 PUBLIC AWARENESS - EDUCATE AND INFORM THE PUBLIC ABOUT THE NATURE OF ALS THROUGH ADVOCACY, NEWSLETTERS, SOCIAL MEDIA AND EVENTS. 78558 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 $83 MILLION IN THE QUEST TO UNLOCK THE MYSTERIES OF ALS. IN THE PAST 21 YEARS THE MINNESOTA, NORTH DAKOTA, SOUTH DAKOTA CHAPTER HAS HELPED RAISE MORE THAN $2.7 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 98 DIFFERENT RESEARCH PROJECTS COVERING EVERY HYPOTHESIS THAT NOW EXISTS ABOUT THE PATHOGENESIS OF THIS DISEASE. 2403700 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 20 0 21 1 0 0 0 0 1 1 1 1 0 0 0 0 X 14 14 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 AMY BRACHIO 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 AUSTIN CAVES 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 MOJDEH POUL BOARD MEMBER 1.00 X 0 0 0 KIRK PUMPHREY 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 JENNIFER HJELLE EXECUTIVE DIRECTOR 40.00 X 101000 0 0 101000 0 0 1 0 0 0 0 1614681 1395974 730912 3010655 1748 1748 263468 1614681 306372 -42904 -42904 128701 18124 110577 110577 3080076 0 0 69421 960302 565109 111462 283731 29167 17164 3385 8618 68931 40564 8001 20366 92000 54139 10679 27182 25637 25637 4629 2476 2153 1351 675 676 116509 68562 13523 34424 40275 18563 4135 17577 286708 226786 20930 38992 624478 616680 3899 3899 HRBEK SING PROGRAM 291661 291661 RESPITE CARE 231714 231714 LOAN CLOSET EQUIPMENT 206366 206366 BANK CHARGES 30031 30031 92510 63241 10050 19219 3102269 2403700 241732 456837 181836 100794 806789 927595 49289 29703 15325 20683 2601690 1627410 989089 974280 4017 4438 2046345 2057493 131235 158985 28390 46275 172128 159834 331753 365094 X 1665303 1662696 49289 29703 1714592 1692399 2046345 2057493 -22193 0 X 0 1 X 1 0 X 2593332 2520005 2768735 3541596 3010655 14434323 2593332 2520005 2768735 3541596 3010655 14434323 14434323 9979 11133 5492 2288 1748 30640 14464963 1039276 0.99790 0.99570 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4874 4874 2810687 2815561 290778 72695 0 0 275856 286548 288735 290778 1141917 1712876 3432 5089 4257 4874 17652 68964 71637 72184 72695 285480 428220 2601690 1627410 974280 974280 DUE TO NATIONAL ASSOCIATION 140555 DEFERRED RENT 2680 CAPITAL LEASE OBLIGATION 16599 159834 X 3273195 193119 193119 3080076 0 3080076 3295387 193119 193119 3102268 0 3102268 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 193,119. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES 193,119. WALK TO DEFEAT ALS 784225 784225 73944 BLACK WOODS BLIZZARD 616669 539111 77558 149068 6 477255 291345 185910 83360 1878149 1614681 263468 306372 306372 -42904 128701 18124 0 128701 18124 18124 110577 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 EQUIP 81 730912 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 ARE DIAGNOSED WITH ALS AND TWO SUCCUMB TO THE DISEASE. THERE ARE APPROXIMATELY 324 PEOPLE LIVING WITH ALS IN MINNESOTA AT ANY ONE TIME. IN NORTH DAKOTA THERE ARE APPROXIMATELY 42 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 48 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 219 PEOPLE USED THIS PROGRAM AND OVER 1,100 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 8,997 RESPITE HOURS FOR 91 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 PEOPLE WITH ALS 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 333 PEOPLE UTILIZED THIS PROGRAM. AN AVERAGE OF 250 TO 300 ITEMS ROTATED THROUGH THE POOL EACH MONTH, WITH MORE THAN 2,700 ITEMS GOING IN AND OUT OF 8 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 38 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'S 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 141 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. FAMILY ASSISTANCE PROGRAM: THE PURPOSE OF THE FAMILY ASSISTANCE 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 34 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.