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?
- Join in (or start !) a social networking discussion
- Join the “Advocates for ALS” group on Facebook
- Sign up: http://www.facebook.com/home.php?ref=home#/group.php?gid=46567667530&ref=ts
- Become a Greater Bay Area Chapter Facebook FAN
- Sign up: http://www.facebook.com/home.php#/pages/San-Francisco-CA/ALS-Association-Greater-Bay-Area-Chapter/7265231215?ref=ts
- Join the “ALS Association-Greater Bay Area Chapter” group on LinkedIn
- Sign up: http://www.linkedin.com/groups?gid=1723587
- Join the ALSA advocacy team.
- Sign up at http://capwiz.com/alsa/mlm/signup/
-Find a walk: http://web.alsa.org/site/PageServer?pagename=WLK_BP_CA_eventlist
-Use the online tools to raise money for research and patient programs. It’s easy and fun!
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.
-Register today: http://webba.alsa.org/site/PageServer?pagename=BA_volunteer
-There are LOTS of opportunities! We can find a job to suit your skills and time commitment.
- Learn the answers to FAQs
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!
-Share links to research, interviews, stories, events, clinical trials
-Post encouraging messages
[*ATE] – ALS…Together it Ends