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, September 18, 2008

One Last Chance To Save Our Investments

No, this won't help with the tanking stock market, but it can help with the time and money and effort that many have invested in getting an ALS Registry at the CDC.

If we do nothing, then the Senate won't see a need to mess with S.3297 and all of those trips to Washington and appointments in district offices and emails are down the drain. We lose everything and have to start from scratch in 2009.

A few of us remember the first talk of an ALS registry at the advocacy conferences back in the early part of the decade. There was finally ALS Registry Act legislation introduced in 2005, and for two years we worked on that and it went poof when it wasn't passed in two years. We started over with the ALS Registry Act of 2007, and today that legislation has overwhelmingly passed the House and would have been passed easily by the Senate a year ago had it not been for one Senator who single-handedly stopped it.

How many dollars have been invested in trips to Washington and communications and time off work to get the legislation this far?

An even more important investment is the time and energy of people with ALS who have exerted great efforts to be heard. Many of them who worked on the ALS Registry Act of 2005 are no longer with us. Many more have given a big slice of the time they have left to improve the lot of others by working to get the current ALS Registry legislation passed.

The investment has both a dollar price and a priceless cost of vitality of people with ALS. When they overdo it getting to legislators' offices, they don't bounce back. They literally have invested precious pieces of their lives.

We all need to make one more simple investment today and email our Senators. If we don't, we lose our complete stake in the ALS Registry Act and the Fed won't be there to bail us out.

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