ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, June 11, 2009

Remember How Exciting It Was To Pick Up The Prints At The Fotomat Booth?

Following is an email communication in its entirety from the ALS Association:

We are pleased to share with you the following story which captures the empowering highlights from last month's National ALS Advocacy Day and Public Policy Conference. The entire story also can be found here.

Photographs taken during the conference that show the emotion and excitement experienced by attendees are available for viewing and purchase via the Advocacy Day page of The ALS Association website at
www.alsa.org/policy/alsday.cfm.

Save the Date
Thank you to everyone for helping to make the 2009 National ALS Advocacy Day and Public Policy Conference such a tremendous success! We look forward to another empowering Conference next year, May 9-11, 2010.

In the meantime, please encourage everyone you know to join our year-round advocacy efforts by signing-up to become an ALS Advocate via the Advocacy Action Center of our website,
http://capwiz.com/alsa/mlm/signup/. As an ALS Advocate, you can make a difference with the click of a mouse!
___________

Advocacy Delivers the Roadmap to a Cure
2009 National ALS Advocacy Day and Public Policy Conference

"I truly didn't grasp what a powerful experience this was until I attended in person," said Stephanie Steele, after attending her first national ALS Advocacy Day and Public Policy Conference, which was held in the nation's capital in May. Stephanie came to Washington to advocate with her father, Daryl Thorson of Sioux Falls South Dakota, who has ALS and is a veteran attendee of the Advocacy Conference. Upon arrival in Washington, she quickly learned what Daryl experienced after his first trip to the conference:

The power of the conference is found in the people attending and the knowledge that
families impacted by ALS are not alone in the fight - that they can make a difference.

In fact, advocates from across the country representing the entire ALS community - people with ALS, families, caregivers, researchers and clinicians - came together for the 2009 conference to share their hopes and experiences and to join The ALS Association in creating the roadmap that will lead to a treatment and cure.

The ALS Association's Public Policy Conference is part of a year-round strategic effort to improve patient care, advance research and empower people with ALS through advocacy. By leveraging the single largest source of ALS research funding, the federal government, the Advocacy Conference is making a difference in more ways than one. For example, unlike virtually anything else experienced by families with ALS, advocacy presents people like Stephanie and Daryl with the opportunity to play an active role in the fight against the disease - to fight back against ALS. Indeed, the accomplishments that resulted from last year's conference left the government poised to spend more than $1 BILLION on ALS over the next 10 years.

Armed with a story to tell and a passion to make a difference, Stephanie and the hundreds of ALS Advocates who attended this year's conference flooded the Halls of Congress and met with nearly 400 Senators and Representatives. The goals:
To continue funding for the national ALS Registry, which may become the single largest ALS research project ever created; and
To double funding for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a program whose sole mission is to develop a treatment for ALS.
It is clear that the meetings made an impact as 33 Senators signed a letter calling on the Senate to increase funding for the ALSRP to $10 million. This is the largest number of Senators who have ever signed onto our DOD funding letter, which last year led Congress to enact our request and provide $5 million for the program. The support generated this year - in just a matter of days - was greater than similar letters supporting other disease research. Why? Because advocates told the ALS story, put a face on the disease, and made a policy issue personal. After all, Members of Congress can't forget shaking the hand of a person with ALS who no longer can return the grip. As Stephanie said, "I believe the personal visits make it impossible for our message to get lost in the shuffle."

The sense of empowerment was not only felt walking the Halls of Congress. It was present on each day of the conference - whether during the conference's opening session where advocates from across the country announced their presence in Washington, the "Prep for the Hill" session or even the Mother's Day BBQ where attendees had the opportunity to meet hundreds of others who share the same experiences and the same hopes in the journey toward a treatment.

The Advocacy Conference included other empowering sessions in addition to Advocacy Day on the Hill. To read the entire story about the 2009 Advocacy Conference, including: the research and policy breakout sessions; the celebrities who joined us in Washington to fight ALS, like former Major League Baseball All-Star pitcher Curt Schilling; the 2009 candlelight vigil; and a moving wreath laying ceremony held at the Tomb of the Unknowns at Arlington National Cemetery, please click on the following link: http://capwiz.com/alsa/attachments/5_Advocacy_Delivers_the_Roadmap_to_a_Cure__Full_Story_.pd
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Join Us in 2010!

The ALS Association encourages the entire ALS community to join us for next year's conference, which takes place May 9-11, 2010. And please participate in The Association's year round advocacy efforts by signing-up to become an ALS Advocate TODAY at
www.alsa.org/policy/involved.cfm.
In the meantime, we invite you to share memories and view photos taken during the conference at
www.alsa.org/policy/alsday.cfm.

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