Amyotrophic Lateral Sclerosis Association

Programs: Patient care services: case management and supportive programs and services provided to 318 individuals diagnosed with als and their family members at no cost in eastern missouri and central and southern illinois. We help family navigate through healthcare system and strive to increase functional independence and improve quality of life for patient and family members. We assess patient / family needs and coordinate individualized care plans that include als specific disease education and counseling, home visits, end of life care planning, grief counseling; increased # of clinic partnerships: als center of excellence, st. Louis university and affiliated clinics now at washington university, va medical center st. Louis john cochran and st. Francis medical center, cape girardeau. Other community partners provide durable medical equipment, seating / mobility, hospice / home health and caregiver relief, home modification, nutritional supplements, transportation assistance, supportive therapies, augmentative communication and assistive technology equipment. Thanks to the als ice bucket challenge for the 4th year in a row we have been able to double the financial support to our certified treatment center, increase grants for respite care and nutritional supplements that we normally provide.

education, awareness and advocacy: community education working to stimulate public awareness through advocacy activities on state and national level. We provide an educational institute for health care professionals, monthly patient information updates, printed, video and cd lending library, als educational resource books and children's activity books and on line resource manuals for assisted technology, loss and grief, va healthcare, new patient and va benefits. Care connections program to organize efforts of family and friends to provide patient and family additional help, care and support. Through public outreach efforts, media relations, social media and the internet we continually tell our story and the story of those battling als to impress upon the importance of our services and continued funding needed for care services and als research.

research: one of 39 other chapters across the country supporting global research and efforts are focused towards a single vision of a world without als. Radicava, first new treatment for als in two decades is now on the market and four new als genes were discovered. Our chapter dedicates funds each year directed towards some of the most promising als research projects, all related to finding the cause, a treatment and a cure and patients are able to enroll in clinical trials. The als association is the only organization dedicated solely to the fight against als. The organization as a whole funds aggressive, cutting edge research actively supporting 150 projects in ten countries using the newest techniques while fostering collaborative initiatives among government agencies, the private sector and scientists who are invested in translational research. Thanks to the als ice bucket challenge we have been able triple research funding for the past four years.