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.

Friday, December 5, 2008

ALS Registry Act - Authorization Doesn't Get The Job Done

The ALS Registry Act passed a few months ago was a big, difficult victory, but authorization alone doesn't cut the mustard. Without funding, authorization is a hollow victory. Nobody at the CDC will be counting noses and retaining ALS data until some funding is assigned to the ALS Registry.

The new administration seems to be in listening mode, and now is the time for us to give them an earful about ALS and the need to get the registry funded and implemented.

From this morning's (December 5) Wall Street Journal --

... Mr. Daschle will say the Obama administration wants input
from supporters -- as a way of getting average Americans to feel connected to
the process and invested in its success. At some point, the administration may
seek to mobilize supporters to lobby Congress or otherwise build support for a
plan.... Already, the Obama transition office has posted two health-care
videos on its Web site,,
and it is soliciting comments and ideas from people via the site.

Please use this opportunity to express the importance of implementing the ALS Registry to HHS Secretary-elect Daschle and the Obama administration at and "Submit Your Ideas." Today they are listening. By January, they may be so overwhelmed with problems that it will be much harder to get ALS on their radar.

1 comment:

  1. It wouldn't hurt to email President Bush, too. Let him know that there are thousands of PALS who would like their death sentences pardoned.