|What We Do
There are several organizations that support people with ALS, but we're different. Many groups focus on only one element of ALS support, while we are committed to all aspects of disease management: local care, to support people with ALS who need help now; advocacy, to ensure public policy serves the needs of ALS patients; and research, so that one day we can eliminate this disease entirely. All three of these areas encompass a continuum of care that helps to improve the lives of people living with ALS as well as those who may face an ALS diagnosis in their future.
ALS is a devastating disease -- physically, emotionally, financially and logistically. Our goal is to alleviate as much of a family's burden as we can. The ALS Association helps patients and families cope with the day to day
challenges of living with ALS by providing information, resources, and
referrals to many sources, including a wide variety of community
services. Our care service coordinators enhance the continuity of care for people with ALS and ensure that those living with the disease are receiving necessary care, resulting in improved health outcomes, better disease planning and reduction or avoidance of complications.
Click here to learn more about local care.
The ALS Association is recognized as the global leader in ALS research, and has contributed $99 million dollars to support a global network of scientists who conduct cutting-edge ALS research across a variety of disciplines. In the past several years, this network of scientists has made significant advancements in understanding ALS and making strides in the effort to find treatments and a cure.
Locally, the St. Louis Regional Chapter encourages people diagnosed with ALS to sign up for the National ALS Registry, which documents information about ALS to help researchers find patterns in the disease, and connects patients to clincial trials.
Click here to learn more about ALS research.
It's important that our government hear directly from people who live with ALS and those that care for them. We work on a local, state and national level to improve the quality of life for people with ALS, and we also help empower ALS patients to make their voices heard.
ALS Association advocates have made significant strides for people with ALS in recent years. For example, as a direct result of our advocacy, Congress passed a law that shortened the Medicare wait time for ALS patients from two years to five months.
As part of our advocacy efforts, every May we take a group of people with ALS, caregivers and staff to the National ALS Advocacy Day and Public Policy Conference in Washington D.C. There, more than 750 participants from across the country convene to learn about the latest ALS research and meet with members of Congress to ensure that people with ALS have access to the care and technology they need. In 2014 alone, the federal government invested more than $14 million in research because of the efforts of these passionate advocates.
Click here to learn more about advocacy.
PUBLIC EDUCATION & AWARENESS
Through public outreach, media relations, social media and the internet, The Association continually raises awareness about ALS and the search for a cure. We have achieved expanded awareness and support of ALS issues through relationships with local corporations, organizations and news media.
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