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.

Monday, October 11, 2010

As We Approach The Mid-term Elections, Please Ask Questions

Hundreds of Americans have made the ALS advocacy trip to Washington. Many have met huge accessibility and caregiving challenges to go there to ask for relatively modest federal funding for ALS research and for a registry.

Sometimes a Congressperson or Senator will sit down with the advocates in person and will really listen. Sometimes the appointment is delegated to a health assistant who listens and passes the message along. Sometimes the appointment is fluffed off by a health assistant who is watching the clock for lunch.

ALS is just one issue among many that voters need to consider, but it's an important one. It's a matter of life and death for the tens of thousands of Americans dealing with the quickly ticking ALS clock. It's a matter of respect for our veterans who risked their lives for us only to have a delayed, terminal disease as a fringe benefit for all they gave. It's a medical concern for every American. It's a respect-life issue. It's important.

As candidates spend more money on political advertising that we could ever wish for ALS research, please take a moment and ask some questions of candidates before you vote.
  • Will you support medical research funding for ALS via the ALSRP program at the DOD?
  • Will you support funding for the ASTDR ALS Registry at the CDC?
  • Will you support the federal government working with us to get to the bottom of ALS in veterans?
  • Will you support veterans' benefits for those with ALS?
  • Will you meet with us when we come to Washington?
  • Are you willing to listen and learn?
There is a big difference in attitudes about ALS and the role of the federal government, even within parties. There is a big difference in attitudes about meeting with average citizens and listening and learning.

This is a good time to ask candidates and evaluate before you cast that vote in November.

This is also a great time to ask people who have been to ALS Advocacy Day to share their experiences with individual legislators who might be running for reelection. That could be an important eye-opener.

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