Advocacy


Date	Event
7/19	Golf Tournament North Ranch Country Club
7/19	Game Day Tournament
8/7	Circle of Care Training
8/21	NinaPalooza
8/24	Walk to D'Feet ALS Kick-Off Party
10/2	Walk to D'Feet ALS Reed Park
10/16	Walk to D'Feet ALS Bakersfield
10/23	2nd Annual Ernie Wallengren Memorial Hoopfest
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Ad-vo-cate – n. 1. One who supports or defends a cause. 2. One who pleads on behalf of another.

The ALS Advocacy Team works together to keep elected officials apprised of ALS-specific legislation and seek their support.

In 2004, we are focusing on the following priorities:

1) To ensure that the implementation of the historic Medicare Waiver law for ALS patients is a priority. At the close of the 106th Congress, legislation was approved and a bill was signed into law that waived the 24-month waiting period for ALS patients to receive Medicare benefits. HCFA has announced that the law is effective as of July 1, 2001. Communication of this law through the Social Security Administration Office and through every Member of Congress’ home district is essential for full implementation.

2) Advocate for the passage of legislation to make prescription drug benefits available to Medicare beneficiaries. ALS advocates have been communicating this important need to Members of Congress, including the establishment of specific goals such as a stop-loss measure to ensure adequate assistance for ALS patients.

3) Continue to work to double the National Institute of Health (NIH) budget in five years. Currently, we are in the fourth year of this goal. This year, we’ll be advocating a 16.1% increase or $3.4 billion to continue our goal.

4) Define and develop a working strategy to meet the increasing societal problems for home health care.

5) Advocate for a postal stamp to create awareness and have a specific percent of the proceeds be dedicated to ALS research at the NIH, similar to the breast cancer stamp.

When communicating with Senators and members of Congress we always stress the “ALS Core Messages”.

ALS is a fatal neurodegenerative disease affecting just over 5,000 new patients yearly (nearly 15 new cases per day).
On average, people with ALS survive two to five years from the time of diagnosis.
There is no known cause, prevention or cure.
ALS impacts the entire family.
ALS is not just Lou Gehrig’s disease, it’s anyone’s disease. Everyone is threatened by ALS.

Our California State Senators are:

Senator Dianne Feinstein (D)
Committees: Appropriations; Energy & Natural Resources;Judiciary; Rules & Administration; Select Intelligence; Joint Printing
Website: www.feinstein.senate.gov

Senator Barbara Boxer (D)
Committees: Commerce, Science & Transportation; Environment & Public Works; Foreign Relations
Website: www.boxer.senate.gov

Representatives from the Greater Los Angeles Chapter areas are:

The Honorable William M. Thomas, R - 21st District, Fresno
Website: www.house.gov/billthomas
Committees: Ways & Means (Chair); Joint Taxation

The Honorable Lois Capps, D- 22nd District, Santa Barbara
Website: www.house.gov/capps
Committee: Energy & Commerce

The Honorable Elton Gallegly, R - 23rd District, Oxnard
Website: www.house.gov/gallegly
Committees: International Relations; Judiciary; Resources

The Honorable Brad Sherman, D - 24th District, Thousand Oaks, Woodland Hills
Website: www.house.gov/sherman
Committees: Financial Services; International Relations

The Honorable Howard “Buck” McKeon, R - 25th District, Santa Clarita, Palmdale
Website: www.house.gov/mckeon
Committees: Armed Services, Educations & the Workforce Veterans’ Affairs

The Honorable Howard L. Berman, D - 26th District, Mission Hills
Website: www.house.gov/berman
Committees: International Relations; Judiciary; Standards of Official Conduct

The Honorable Adam Schiff, D - 27th District, Pasadena
Website: www.house.gov/schiff
Committees: International Relations, Judiciary

The Honorable David Dreier, R - 28th District, Covina
Website: www.house.gov/dreier
Committee: Rules (Chair)

The Honorable Henry A. Waxman, D - 29th District, Los Angeles
Website: www.house.gov/waxman
Committees: Energy & Commerce; Government Reform

The Honorable Xavier Becerra, D - 30th District, Los Angeles
Website: www.house.gov/becerra
Committee: Ways and Means

The Honorable Hilda L. Solis, D - 31st District, El Monte, East Los Angeles
Website: www.house.gov/solis
Committees: Education & the Workforce; Resources

District 32 – Sworn in June 6, 2001, The Honorable Diane Watson – more information to follow.

The Honorable Lucille Roybal-Allard, D - 32nd District, Los Angeles
Website: www.house.gov/roybal-allard
Committee: Appropriations

The Honorable Grace Napolitano, D - 34th District, Montebello
Website: www.house.gov/napolitano
Committees: International Relations, Resources, Small Business

The Honorable Maxine Waters, D - 35th District, Los Angeles
Website: www.house.gov/waters
Committees: Financial Services; Judiciary

The Honorable Jane F. Harman, D - 36th District, Redondo Beach
Website: www.house.gov/harman
Committees: Energy and Commerce; Select Intelligence

The Honorable Juanita Millender-McDonald, D- 37th District, Torrance
Website: www.house.gov/harman
Committees: Small Business, Transportation & Infrastructure

The Honorable Steve Horn, R - 38th District, Lakewood
Website: www.house.gov/horn
Committees: Government Reform; Transportation & Infrastructure

Congressional recesses provide a great opportunity for ALSA advocates and caregivers to meet with their Senators and Representatives at home.

Dates subject to change.

If you would like to a part of The ALS Association, Greater Los Angeles Advocacy Team please complete the volunteer application and you will be contacted by Molly Rockey, Director of Volunteer Services.

The ALS Association Greater Los Angeles Chapter • P.O. Box 565, Agoura Hills, CA 91376-0565, Tel: (818) 865-8067
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