Amyotrophic Lateral Sclerosis Association

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.

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 GAIN A 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 550 PLUS PATIENTS AND THEIR FAMILIES A FEW YEARS AGO TO NEARLY 900 CURRENTLY.

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, THAT WERE ELIMINATED IN 2020 AS A RESULT OF THE CORONA VIRUS, AND SUBSTITUTED BY TELEHEALTH COMMUNICATION WITH 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 ALL COMMUNITIES.

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 THE CHAPTER'S GRASSROOTS MEMBERS ACCESS TO LEGISLATIVE REPRESENTATIVES IN ORDER TO VOICE THEIR CONCERNS ON ISSUES IMPACTING ALS PATIENTS AND FAMILY MEMBERS. EVENTS OCCUR BOTH IN PERSON AND VIRTUALLY.