As one stricken with ALS I was particularly interested in the presentation on the national ALS registry at the recent ALS Association Advocacy conference. You could feel the frustration and even anger seethe as the presentation made no clear mention of the progress on the three test platforms that have spent over $8 million in the past three years. That frustration and ire came together when it became clear that a working registry was still years from reality.
When a population with an average survivability of three to five years gets such a mealy mouthed report on a registry that has the promise of finally having a credible database on which to direct studies on the causes and cure for ALS frustration and anger are to be expected.
It is unlikely that I will be alive to see a working registry, but I sure hope someone can light a fire under this drifting program.
They say that the bitterest words at final judgement will be, "I was hungry and you formed a committee." Perhaps an alternative form will be be, "I was dying of a mysterious disease and you formed three expensive pilot projects to figure out how gather clues.. and you did so without any any urgency or accountability."
I wonder if sunshine laws would permit us know know what's going on with these taxpayer-funded pilots.
As one stricken with ALS I was particularly interested in the presentation on the national ALS registry at the recent ALS Association Advocacy conference. You could feel the frustration and even anger seethe as the presentation made no clear mention of the progress on the three test platforms that have spent over $8 million in the past three years. That frustration and ire came together when it became clear that a working registry was still years from reality.
ReplyDeleteWhen a population with an average survivability of three to five years gets such a mealy mouthed report on a registry that has the promise of finally having a credible database on which to direct studies on the causes and cure for ALS frustration and anger are to be expected.
It is unlikely that I will be alive to see a working registry, but I sure hope someone can light a fire under this drifting program.
Many of us hope that ALSA will be quick to report on the big ALS Registry powwow that they told us would be held in June.
ReplyDeleteThey say that the bitterest words at final judgement will be, "I was hungry and you formed a committee." Perhaps an alternative form will be be, "I was dying of a mysterious disease and you formed three expensive pilot projects to figure out how gather clues.. and you did so without any any urgency or accountability."
ReplyDeleteI wonder if sunshine laws would permit us know know what's going on with these taxpayer-funded pilots.