2021-07-26T14:50:27-05:00 2021-01-31 410887288 BOULAY PLLP 7500 FLYING CLOUD DR-STE 800 MINNEAPOLIS MN 55344 990 2020-02-01 411756085 THE ALS ASSOCIATION MINNESOTA NORTH DAKOTA SOUTH DAKOTA CHAPTER AMYO 6126720484 1919 UNIVERSITY AVENUE WEST NO 17 ST PAUL MN 55104 JENNIFER HJELLE EXECUTIVE DIRECTOR 6126720484 2021-07-15 1 JENNIFER HJELLE 999009999 TARA M SCHINI P01714186 9528939320 2021-07-15 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z ALS ASSOCIATION MNNDSD CHAPTER JENNIFER HJELLE 1919 UNIVERSITY AVENUE WEST NO 175 ST PAUL MN 55104 4717950 0 4119 X WWW.ALSMN.ORG X 1993 MN TO DISCOVER TREATMENTS AND A CURE FOR ALS, AND TO SERVE, ADVOCATE FOR, AND EMPOWER PEOPLE AFFECTED BY ALS TO LIVE THEIR LIVES TO THE FULLEST. 21 21 24 85 0 0 3700879 4155841 0 0 73255 -16131 -94345 -78095 3679789 4061615 0 0 0 0 1828062 1527163 0 0 414277 2421728 2207567 4249790 3734730 -570001 326885 5114131 5545484 810790 784053 4303341 4761431 X TO DISCOVER TREATMENTS AND A CURE FOR ALS, AND TO SERVE, ADVOCATE FOR, AND EMPOWER PEOPLE AFFECTED BY ALS TO LIVE THEIR LIVES TO THE FULLEST. 0 1 2157723 CARE SERVICES - HELPING PEOPLE WITH ALS AND THEIR FAMILIES LIVE AS FULL A LIFE AS POSSIBLE THROUGH DIRECT PROGRAMS FOR PEOPLE LIVING WITH ALS (SEE SCHEDULE 0 FOR DETAIL), SUPPORT GROUPS, PHONE SUPPORT, AND REFERRALS. 266974 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 $147 MILLION IN THE QUEST TO UNLOCK THE MYSTERIES OF ALS. IN THE PAST 25 YEARS THE MINNESOTA /NORTH DAKOTA /SOUTH DAKOTA CHAPTER HAS HELPED RAISE MORE THAN $5.0 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. CURRENTLY, THE ASSOCIATION IS FUNDING 162 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. 407426 PUBLIC AWARENESS - EDUCATE AND INFORM THE PUBLIC ABOUT THE NATURE OF ALS THROUGH ADVOCACY, NEWSLETTERS, SOCIAL MEDIA AND EVENTS. 2832123 1 1 0 1 0 0 0 0 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 5 0 24 1 0 0 0 0 1 1 1 1 0 0 0 0 X 21 21 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 MN X X X JENNIFER HJELLE 6126720484 1919 UNIVERSITY AVENUE WEST SUITE ST PAUL MN 55104 PHILIP ALBERT PRESIDENT 2.00 X X 0 0 0 CLAY AHRENS VICE PRESIDENT 2.00 X X 0 0 0 JORDAN SING SECRETARY 2.00 X X 0 0 0 JOHN ORNER TREASURER 2.00 X X 0 0 0 MARY JONES BOARD MEMBER 1.00 X 0 0 0 PETE KLINKHAMMER BOARD MEMBER 1.00 X 0 0 0 STEVE KRAUS BOARD MEMBER 1.00 X 0 0 0 DAVID LAMM BOARD MEMBER 2.00 X 0 0 0 GRANT LANDER BOARD MEMBER 1.00 X 0 0 0 MARY ELLEN LEARY BOARD MEMBER 1.00 X 0 0 0 TINA LINNE BOARD MEMBER 1.00 X 0 0 0 BILL MCCARTHY BOARD MEMBER 1.00 X 0 0 0 JAN NELSON BOARD MEMBER 1.00 X 0 0 0 BRENDA OLSON BOARD MEMBER 1.00 X 0 0 0 JEREMY RICE BOARD MEMBER 1.00 X 0 0 0 SUSAN SCHUSTER BOARD MEMBER 1.00 X 0 0 0 NATHAN STAFF BOARD MEMBER 1.00 X 0 0 0 EZGI TIRYAKI BOARD MEMBER 1.00 X 0 0 0 KRISTI WAITE BOARD MEMBER 2.00 X 0 0 0 DAVID WALK BOARD MEMBER 1.00 X 0 0 0 RYAN TOFTELAND DECEASED 0.00 X 0 0 0 JENNIFER HJELLE EXECUTIVE DIRECTOR 40.00 X 142516 0 0 MARRIANNE KEUHN VICE PRESIDENT CARE SERVIC 40.00 X 115739 0 0 RYAN STAUFF VICE PRESIDENT DEVELOPMENT 40.00 X 115659 0 0 373914 0 0 3 0 0 0 0 1057830 326616 2771395 624385 4155841 55564 55564 489083 477293 83485 11790 -83485 -71695 -71695 9882 1057830 95557 -85675 -85675 7580 0 7580 7580 4061615 0 0 -94226 142517 78384 49881 14252 1124442 701068 289488 133886 33999 20917 3975 9107 120851 74349 14131 32371 105354 64815 12319 28220 102417 65318 10077 27022 17840 17840 702 351 351 281939 190624 27748 63567 5402 4616 187 599 344518 252874 27219 64425 657086 629055 8519 19512 RESPITE CARE 207068 207068 RESEARCH 154524 154524 LOAN CLOSET EQUIPMENT 109499 109499 HRBEK SING PROGRAM 102789 102789 223783 175872 26946 20965 3734730 2832123 488330 414277 143079 161435 745776 1326490 3080 1080 759 100 35260 39952 3386332 1861937 1560485 1524395 1983518 2055603 622656 416911 19518 19518 5114131 5545484 127090 181807 683700 602246 810790 784053 X 4040196 4399361 263145 362070 4303341 4761431 5114131 5545484 326885 131205 0 X X 0 1 X 1 0 X 3746141 4222546 5916970 3700879 4155841 21742377 3746141 4222546 5916970 3700879 4155841 21742377 617228 21125149 15522 20334 34315 51565 55564 177300 21919677 2183200 0.96380 0.96440 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 291 291 3807088 3807379 340369 85092 0 0 337956 360826 362378 340369 1401529 2102294 17582 13380 6476 291 37729 84489 90207 90595 85092 350383 525575 3386332 1861937 1524395 1524395 LONG-TERM CERTIFICATES OF DEPOSIT 416911 C 416911 DUE TO NATIONAL ASSOCIATION 106014 DEFERRED RENT 492603 CAPITAL LEASE OBLIGATION 3629 602246 X 4346643 131205 4489 167174 302868 4043775 17840 17840 4061615 3888553 4489 167174 171663 3716890 17840 17840 3734730 PART X, LINE 2: THE ASSOCIATION 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 ASSOCIATION DOES NOT HAVE ANY SIGNIFICANT TAX UNCERTAINTIES THAT WOULD REQUIRE RECOGNITION OR DISCLOSURE. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES 83,689. LOSS ON ASSET DISPOSAL 83,485. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES 83,689. LOSS ON ASSET DISPOSAL 83,485. WALK TO DEFEAT ALS 768506 766211 2295 45711 GALA 112848 110348 2500 18795 6 186358 181271 5087 31051 1067712 1057830 9882 95557 95557 -85675 7580 0 7580 7580 MN 1 0 0 0 1.00000 JENNIFER HJELLE 1919 UNIVERSITY AVENUE WEST SUITE 1 ST PAUL MN 55104 0 JENNIFER HJELLE RECORD KEEPING, MONEY COUNTING, AND BANK DEPOSITS FOR RAFFLES USED FOR FUNDRAISING PURPOSES 0 X MEDICAL EQUIPMENT 50 624385 VALUATION 0 1 0 FORM 990, PART III, LINE 3 DUE TO THE COVID-19 PANDEMIC, WE MOVED ALL OF OUR SUPPORT GROUPS TO A VIRTUAL FORMAT. WE PROVIDED PEOPLE THE TECHNOLOGY THEY NEEDED IN ORDER TO JOIN THE GROUPS AS PART OF OUR HRBEK SING COMMUNICATION PROGRAM. FORM 990, PART III, LINE 4A AMYOTROPHIC LATERAL SCLEROSIS (ALS), MORE COMMONLY REFERRED TO AS LOU GEHRIG'S 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 AVERAGES 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. 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. ON AVERAGE IN NORTH DAKOTA, ONE PERSON IS DIAGNOSED AND ONE PERSON DIES FROM ALS EACH MONTH. ON AVERAGE IN SOUTH DAKOTA, ONE TO TWO PEOPLE ARE DIAGNOSED AND DIE OF ALS EACH MONTH. AT ANY GIVEN TIME, THERE ARE APPROXIMATELY 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 302 PEOPLE USED THIS PROGRAM AND OVER 1,448 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 FULL-TIME 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 8,752 RESPITE HOURS FOR 94 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 393 PEOPLE UTILIZED THIS PROGRAM. 3,052 PIECES OF EQUIPMENT WENT IN AND OUT OF THE CLOSET DURING THIS TIME. 4. HOME SAFETY 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 39 PEOPLE RECEIVED HOME VISITS THROUGH THIS PROGRAM. 5. SUPPORT GROUPS: THIS YEAR, ALL OF OUR SUPPORT GROUPS FOR BOTH INDIVIDUALS LIVING WITH ALS AND CAREGIVERS WERE MOVED TO A VIRTUAL FORMAT ALLOWING FOLKS TO JOIN NO MATTER THEIR GEOGRAPHY. SOME OF THE SUPPORT GROUPS HAVE EDUCATIONAL SPEAKERS AND SOME BREAK INTO SMALLER GROUPS, ENSURING THE NEEDS OF ALL THOSE WHO ATTEND CAN BE ADDRESSED. 6. FAMILY ASSISTANCE PROGRAM: DUE TO THE COVID-19 PANDEMIC, WE HAD TO PAUSE MUCH OF THIS PROGRAM. FOR THE SECOND HALF OF THE YEAR, WE OPENED UP OUTDOOR OPTIONS, WHERE VOLUNTEERS COULD HELP FAMILIES WITH TASKS SUCH AS YARD WORK, SNOW REMOVAL OF GARDENING. 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 FAMILY, 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 FAMILY FOR CONSULTATION AND SUPPORT, ADVANCE CARE DIRECTIVES, AND TO PROVIDE RESOURCE INFORMATION. IN ADDITION, THE CHAPTER PUBLISHES A MONTHLY ELECTRONIC NEWSLETTER AND PRODUCES A MONTHLY PODCAST, CONNECTING ALS. FORM 990, PART VI, SECTION B, LINE 11B 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, THE VP OF DEVELOPMENT, THE DIRECTOR OF MARKETING & COMMUNICATIONS, AND THE DIRECTOR OF ADMINISTRATION & FINANCE 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 PRIOR YEARS.