Organizations Filed Purposes:
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.
WE IMPROVE THE LIVES OF PEOPLE LIVING WITH ALS BY PROVIDING A WIDE RANGE OF FREE SERVICES. WE ALSO SUPPORT WORLDWIDE RESEARCH TO FIND A CURE FOR ALS AND SPONSOR EDUCATIONAL AND ADVOCACY PROGRAMS TO BENEFIT THE ALS COMMUNITY.
CARE SERVICES - THE CHAPTER WORKS TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE LIVING WITH ALS BY PROVIDING A HOST OF FREE SERVICES. THESE SERVICES INCLUDE HOME VISITS FROM COORDINATORS WHO PROVIDE CASE MANAGEMENT AND ASSISTANCE WITH BENEFIT APPLICATIONS, ASSISTIVE TECHNOLOGY LABS THAT PROVIDE ACCESS TO SPEECH GENERATING AND ENVIRONMENTAL CONTROL DEVICES, MULTIDISCIPLINARY CLINICS THAT ALLOW PATIENTS TO SEE, IN ONE VISIT, A VARIETY OF HEALTHCARE CLINICIANS, EQUIPMENT LOAN CLOSETS THAT PROVIDE ACCESS TO ITEMS SUCH AS WHEELCHAIRS, WALKERS AND BEDS, SUPPORT GROUPS FOR PEOPLE WITH ALS AND CAREGIVERS AND MUCH-NEEDED TRANSPORTATION GRANTS. THE CHAPTER ALSO HOSTS SEVERAL EVENTS THAT BRING PEOPLE WITH ALS AND THEIR FAMILIES TOGETHER TO RAISE AWARENESS FOR ALS IN OUR COMMUNITIES.
RESEARCH - THE CHAPTER SUPPORTS THE ALS ASSOCIATION'S GLOBAL ALS RESEARCH PROGRAM TO FIND TREATMENTS AND A CURE FOR THIS FATAL DISEASE. THE AVERAGE LIFE EXPECTANCY OF SOMEONE WITH ALS IS ONLY 2-5 YEARS FROM DIAGNOSIS. ALSO, FOR UNKNOWN REASONS MILITARY VETERANS ARE NEARLY TWICE AS LIKELY TO BE DIAGNOSED WITH ALS. RESEARCH IS CRITICAL TO BETTER UNDERSTANDING OF THE DISEASE AND CREATING BETTER TREATMENTS AND ULTIMATELY A CURE FOR ALS. RECENT BREAKTHROUGHS MADE POSSIBLE BECAUSE OF THE CHAPTER SUPPORT INCLUDE: IDENTIFICATION OF THE SINGLE MOST COMMON KNOWN GENETIC ALS FACTOR, DEVELOPMENT OF A METHOD THAT CAN TEST TREATMENTS ON DIFFERENT FORMS OF ALS IN THE LAB AND THE FIRST FDA-APPROVED STEM CELL TRANSPLANT TRIAL IN ALS. THE PATIENT POPULATION IS GROWING RAPIDLY FROM 650 PLUS PATIENTS AND THEIR FAMILIES A FEW YEARS AGO TO NEARLY 900.
PUBLIC EDUCATION & AWARENESS - EDUCATIONAL SYMPOSIUMS ARE OFFERED THROUGHOUT THE YEAR IN DIFFERENT GEOGRAPHICAL LOCATIONS WITHIN THE CHAPTER TERRITORY. THESE PROGRAMS ARE DESIGNED FOR PATIENTS AND FAMILY MEMBERS AS WELL AS HEALTHCARE PROFESSIONALS ON A WIDE RANGE OF TOPICS WHICH IMPACT ALS PATIENTS. ADVOCACY EVENTS ARE ALSO CONDUCTED THROUGHOUT THE YEAR WHICH ALLOW OUR GRASSROOTS MEMBERS ACCESS TO LEGISLATIVE REPRESENTATIVES IN ORDER TO VOICE THEIR CONCERN ON ISSUES WHICH IMPACT ALS PATIENTS AND FAMILY MEMBERS. EVENTS OCCUR BOTH IN PERSON AND ALSO ON THE INTERNET.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
Name | Title | Hours Per Week | Total Salary |
Lynn Aaronson | EXECUTIVE DIRECTOR | 40 | $127,281 |
Tremetris Harrell | VP OF CARE SERVICES | 40 | $100,991 |
Thomas Mohler | DIRECTOR | 2 | $0 |
Kevin Smith | DIRECTOR AS OF SEPT. 2019 | 2 | $0 |
Keith Segalman | DIRECTOR | 2 | $0 |
Craig Rice | DIRECTOR AS OF SEPT. 2019 | 2 | $0 |
David Lowe | DIRECTOR | 2 | $0 |
Betsy Lichtschein | DIRECTOR | 2 | $0 |
Andrea Kelleher | DIRECTOR AS OF SEPT. 2019 | 2 | $0 |
Sally Horner | DIRECTOR | 2 | $0 |
Zachery Daniel | DIRECTOR AS OF SEPT. 2019 | 2 | $0 |
Scott Bowen Evans | DIRECTOR AS OF SEPT. 2019 | 2 | $0 |
Richard Bodson | DIRECTOR | 2 | $0 |
Alethia Baggett | DIRECTOR | 2 | $0 |
Andrew Berman | ASSISTANT TREASURER | 2 | $0 |
Scott Golden | TREASURER | 2 | $0 |
Judith Bailey | PAST PRESIDENT | 2 | $0 |
Steve Wellner | SECRETARY | 2 | $0 |
Robert Roseman | VICE PRESIDENT | 2 | $0 |
Paul Ingholt | PRESIDENT | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202001579349301650_public.xml