Monday, May 4, 2009


What is an advocate? (Webster’s) One that supports or promotes the interests of another

What is ALS Advocacy? The support and promotion of ALS related interests, more specifically research, health & long-term care and caregiver support, at all levels (National, State, Local) of elected government. ALSA advocates work to effectively lobby Congress, the White House, and related national organizations, as well as state and federal agencies for funding and support of programs which will benefit PALS and their families. The true strength of the advocacy network is the dedication of the many individuals affected in some way by ALS. Individuals who have made the decision to make a difference today, so that the future can be brighter for PALS and their families.

Why is it important? Joining together to raise our voices on behalf of PALS, we have been able to accomplish the following:

  • Presumptive Disability (and accompanying benefits) for Veterans
  • Passage of the ALS Registry Bill
  • Passage of the 24-month Medicare waiver for ALS patients and the presumptive disability ruling from the Social Security Administration.
  • Increased federal funding for ALS research at the NIH
  • Federal funding for ALS research through the Department of Defense

Who can be an advocate? Anyone with a commitment to help current and future generations affected by this horrific disease. Anyone willing to raise their voice or write a letter to an elected official. Anyone willing to make a difference. You!

As an advocate, what do you do?


  • Sign up, lace up your sneakers and walk in a Walk to Defeat ALS.
    -Find a walk:
-Use the online tools to raise money for research and patient programs. It’s easy and fun!
  • Sign up, don your padded shorts and ride your bike to Defeat ALS.
    -Pick your ride:
    -Use the online tools to raise money for research and patient programs.
  • Sign up and volunteer for one of the many chapter events/projects.
    -Register today:
    -There are LOTS of opportunities! We can find a job to suit your skills and time commitment.

  • EDUC[ATE*]

    • Learn the answers to FAQs
  • Speak up and speak out.
    -Educate your friends, family, co-workers, everyone in your personal community. Get them involved!


    • Update your social networking sites (i.e. Facebook, LinkedIn, Twitter) on a regular basis.
      -Share links to research, interviews, stories, events, clinical trials
      -Post encouraging messages
    • Promote local events to raise ALS awareness by participating and sending event invites to your friends.

    [*ATE] – ALS…Together it Ends

    No comments: