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2007 Accomplishments and Advocacy Day Registration



Help us turn fear into hope and hope into action by joining us for The ALS Association's 2008 National ALS Advocacy Day and Public Policy Conference, which will take place May 11-13 in Washington, DC. Please visit our website, www.alsa.org/policy/alsday.cfm, to register to attend the conference and to view and print the 2008 registration brochure that provides a detailed schedule of events for this year's conference.

The brochure also includes information about early bird registration deadlines and registration fees to attend the conference, which are waived for all people with ALS and for a caregiver attending the conference with them. Hotel information, including contact information to reserve ADA hotel rooms, also can be found in the registration brochure.

Advocacy Delivers!
Advocacy Day is an integral part of our year-round outreach to Congress. In recent years, advocates have more than just raised awareness of the disease in the halls of Congress. They have fought for and passed significant legislation that not only benefits the lives of PALS and families today, but also those whose fight has not yet begun. For example, The ALS Association has more than quadrupled annual government funding for ALS research from $15 million per year in 1998 to over $60 million in 2007 alone; enacted legislation to waive the 24-month Medicare waiting period for people disabled with ALS - the only time Congress has waived the waiting period since it was first implemented; and established a presumptive disability ruling to ensure PALS have timely access to Social Security benefits.

2007 Accomplishments

The ability of advocacy to produce results and to empower the ALS community is clearly evident just by looking at some the accomplishments we realized in 2007 alone. They include:

Secured nearly $3 million in funding for the ALS registry at the Centers for Disease Control and Prevention (CDC). The funding builds upon and expands registry projects underway at the CDC and represents a $2 million increase during a year when most other health programs were cut or received little or no additional funding.

Introduced and passed the ALS Registry Act in the House of Representatives by an overwhelming 411-3 vote! The bill would authorize $89 million for the ALS registry.

Won the support of more than two-thirds of the Senate as cosponsors of the ALS Registry Act, leading the Senate Health, Education, Labor and Pensions Committee to pass the bill by unanimous vote. We are working with our champions in the Senate to pass the bill as early as possible this year.

Partnered with the DOD as it provided $5 million to establish the Department's first-ever ALS Research Program (ALSRP). Unlike many other research programs that are focused on basic research, the ALSRP is promoting translational research and is designed to develop new treatments for ALS.

Doubled the number of e-mails sent to Congress in 2007 in addition to the more than 15,000 letters from advocates that were hand delivered by the Advocacy Department to Capitol Hill in 2007. More than 2,300 calls and e-mails were made to the Senate in just two days during our first ever National Call for a Cure!

Enacted legislation that provides much needed resources to the Food and Drug Administration and will help to bring new treatments for ALS from the lab to the bedside as soon as possible.

Advanced the fight in support of veterans who are at a greater risk of ALS by increasing funding for ALS research at DOD, including $10 million for Gulf War Research (up from $5 million) and $50 million for the Peer Reviewed Medical Research Program (PRMRP). Congress also designated ALS as one of only a small handful of diseases eligible for funding under the PRMRP.

Worked with Congress as two people with ALS testified before Congressional Committees in 2007.

Increased the number of ALS Advocates by more than 50%. We have advocates in all 50 states, including in states where The Association does not have a Chapter. In addition, the Virtual Advocacy Community on The Association's website has brought together more than 720 committed advocates from across the country, including nearly 250 PALS.

Supported efforts to preserve access to power wheelchairs in the Medicare program, including blocking an initiative that would have eliminated the first month purchase option for power chairs. Also orchestrated the appearance of two people with ALS at a Capitol Hill press conference to advocate in support of legislation that would exclude complex power wheelchairs from Medicare's competitive bidding program.

Partnered with the Social Security Administration as it examines new ways to improve access to disability benefits and testified in support of people with ALS during a 2007 SSA hearing.

Expanded our outreach as twice as many people used the "Tell a Friend" feature of our alerts to share updates and action items with advocates we may not have reached in previous years.
These are just a few of the accomplishments that advocates achieved in 2007 as a result of Advocacy Day and their year-round outreach to Congress. We are confident that with your continued participation and outreach, we can realize many more significant victoires in 2008!

We hope you will join us in Washington, DC this May as we turn fear into hope and hope into action. Together, we can create a world without ALS.

If you have any questions about this year's National ALS Advocacy Day and Public Policy Conference, please contact the Advocacy Department toll-free at 1-877-444-ALSA or advocacy@alsa-national.org.

We look forward to seeing you in Washington!