Ice Bucket Challenge Progress

 

What We Do

Care Services

The ALS Association - DC/MD/VA Chapter helps people with ALS and their families cope with the day to day challenges of living with ALS by providing information, resources (Chapter and community services), and support. All of the programs and services provided by the Chapter are FREE OF CHARGE, they include:

Support & Resources- Every person with ALS has an expert caseworker to guide them through the unique challenges of ALS.

ALS Multidisciplinary Clinics- People with ALS have the ability to see a variety of doctors and receive comprehensive treatment in one day and in one place.

Assistive Technology (AT) Labs- The AT Clinics allow people with ALS to have greater access to communication and environment control devices and support that increase quality of life.

Equipment Loan Closets- The Chapter provides access to the medical equipment needed to make living with ALS easier.

Monthly Support Groups-  People with ALS and their caregivers can receive resources, information and fellowship from other families facing the disease and our Chapter staff. 

For more information about The ALS Association - DC/MD/VA Chapter's Care Services Program, click here.

These free programs and services are only made possible through the generous support of individual and corporate donors, foundations and Chapter fundrasing events, including the Walk to Defeat ALS

Advocacy & Public Policy

The Association’s network plays a lead role in advocating for increased public and private support of ALS research and public policy initiatives that responds to the needs of people with ALS.  Our organization’s public policy efforts in Washington, D.C. have raised the profile of ALS at the White House, among members of Congress, and within federal agencies, including the National Institutes of Health, Centers for Medicare and Medicaid Services, Food and Drug Administration, Department of Defense, Department of Veterans Affairs, Social Security Administration, and Centers for Disease Control and Prevention.  

Among the signature accomplishments of our Public Policy Department are:

24-Month Medicare Waiver-Eliminated the 24-month waiting period that people disabled with ALS had to endure before they could start receiving Medicare benefits. ALS is now one of only two diseases for which the waiting period does not apply, and the waiver for ALS is the only change Congress has made to the waiting period since it was first established.

National ALS Registry-Enacted the ALS Registry Act to establish the first nationwide ALS patient registry, which may become the single largest ALS research project ever created.  The registry is administered by the Centers for Disease Control and Prevention and people with ALS across the country began enrolling in the registry in October 2010.

Veterans Benefits-Advocated for historic regulations at the Department of Veterans Affairs that designate ALS as a service connected disease. Veterans with ALS and their survivors are now eligible for full health and disability benefits, regardless of where or when they served in the military and regardless of how soon after discharge they were diagnosed.

To learn more or to sign up as an ALS advocate, click here

Research

Since 1985, through our Translational Research Advancing Therapies for ALS (TREAT ALS™) program, The ALS Association has funded more than $99 million in research and clinical management projects. This unrelenting focus has resulted in some of the greatest ALS research discoveries to date.
We’re presently funding close to 100 active research projects, selected through a peer review process, involving top ALS scientists.
From the earliest stages, The ALS Association has recognized novel approaches that have led to significant ALS research findings.

Worldwide Comprehensive Approach
The ALS Association is at the forefront of the global research effort to find treatments and a cure for ALS. How is our research program unique?

  • Operates with a global scope
  • Funds all phases of ALS research
  • Aims to translate research findings into meaningful therapies
  • Forges partnerships with government, academia, industry and other nonprofits
  • Benefits from having direct access to patients to participate in clinical trials 
  • Involves a world-renowned panel of scientific advisors 
  • Employs a robust scientific review process
  • Exercises flexibility to ensure rapid funding of novel ideas
  • Funds projects with the highest scientific merit
  • Encourages young scientists to pursue careers in ALS
  • Thrives as part of The ALS Association’s three-pronged approach to find treatments and a cure for the disease through research, care services and public policy

Changing Landscape of ALS
In the past decade, major changes in the pharmaceutical industry and the drug development landscape have taken place. The severity of ALS, the lack of effective treatments, the significant progress made in ALS research as well as the identification of targets that make it more tractable to develop therapies for ALS have all resulted in the increased interest in ALS in the industry sector. ALS is linked to other neurodegenerative diseases like Alzheimer’s and Parkinson’s. Increased understanding of one disease is likely to have major benefits in understanding the others. To maximize results, The Association channels our funding, made possible through the generous support of donors, into global research projects focused on six tightly-related areas:

  • Identifying ALS genes
  • Understanding disease mechanisms
  • Using stem cells for disease modeling and therapy testing
  • Finding disease biomarkers
  • Developing therapies
  • Improving clinical trials

Supporting Projects and People
The ALS Association offers a variety of grants and awards to individual scientists and private industry to accelerate the development of treatments and a cure for the disease.

Spirit of Collaboration and Leadership
The ALS Association holds workshops each year that bring together scientists researching ALS and other neurodegenerative diseases, the pharmaceutical industry and biotech companies to generate new research suggestions and fresh insight. In addition, The Association staff serve and hold leadership positions on a various national and international organizations dedicated to unlocking the mysteries of ALS.

For more information on The ALS Association's Research Program, click here