"Tales from the Bed" The Jenifer Estess A.L.S. Story

I finished up a book tonight that I couldn't put down.

Tales from the Bed is an autobiography of Jenifer Estess, and her struggle with the fatal disease Amyotrophic Lateral Sclerosis (A.L.S.), also known as Lou Gehrig's disease.



Photo of Jenifer

If you haven't heard about this woman, read the book. Please.

I found a memorial about Jenifer written by Douglas Martin from The New York Times. He wrote:

Ms. Estess was told in 1997 that she had the condition, a degenerative disease of the nerve cells that control muscular movement. It affects 30,000 Americans and is usually fatal within two to five years.

With friends and family members, Ms. Estess set up Project A.L.S., and, calling on her experience as a producer, she raised more than $17 million and brought together scientists from different laboratories to cooperate in the search for a cure.

If you can, please visit the Project A.L.S. website and make a donation.

Stem cell research and in particular embryonic stem cell research has shown the most promise in regards to possible treatments for this horrible disease. As reported:

Research in Dr. Tom Jessell's laboratory demonstrates that mouse embryonic stem cells can indeed be differentiated into motor neurons and when introduced into the spinal cord of embryonic chicks, motor axons form contacts with skeletal muscle. This promising research demonstrates the progress that has recently been made. Scientists acknowledge that the leap from an embryonic chick to a human adult is huge and currently an unobtainable goal. However, the promise of stem cells as vehicles for trophic support for dying neurons is possibly a more feasible goal and many studies are focusing on this approach. Several studies have shown that embryonic stem cells in culture can be genetically modified. Using this technology, stem cells can be modified to deliver genes and other factors to dying motor neurons. More research is needed in this area.

Congress has been trying to override President Bush's limitations on Stem Cell research.

However, Republicans have successfully delayed a confrontation with the President. As reported on Bloomberg:

Republican Senator George Allen of Virginia said stem cell research shouldn't have a prime slot on the lawmakers' agenda.

``If nothing happens on stem cells, it's not the end of the world,'' he said. ``Research on embryonic stem cells will go on, financed by states and the private sector.'' A resolution of the asbestos issue, Allen said, ``is a must-do.''

The cold-hearted Administration of this President is already showing negative effects on the search for the cure of this and other related neurologic diseases. As noted by the University of Washington newspaper:

Cuts in federal funding for human embryonic stem cell research may slow medical progress, lead top scientists away from the UW and ensure that human embryonic stem cell research continues without public dialogue, University researchers say.

The ban on federal funding for new cell lines has greatly slowed the pace of research, said hemtology professor Anthony Blau. The ban has also allowed countries like South Korea -- which federally funds human embryonic stem cell research -- to progress much faster than the United States, he said.

Congress is willing to allow additional research on embryos that are destined to be destroyed anyway. Congressmen know that Americans realize that it isn't a sign of morality to allow embryos to be tossed into the garbage in fertility clinics when they could be used to alleviate and provide potential cures to diseases as devastating as A.L.S.

As reported:

In May, the House of Representatives defied President George W. Bush's veto threat and easily approved bipartisan legislation that would expand federal funding of embryonic stem cell research -- although not by a veto-proof margin.

Since then, backers of the legislation, which would basically lift the limits Bush imposed on stem cell research in August 2001, have been pushing for a Senate vote.

The stem cell legislation would allow federally funded research on stem cells derived from leftover embryos in fertility clinics. There are currently about 400,000 such frozen embryos, many of which will otherwise be destroyed.

Bush has vowed to veto stem cell legislation because embryos are destroyed when the stem cells are extracted.

It is time for new leadership in Washington. We need Representatives and Senators that can lead with a view towards cures and providing hope for Americans who are suffering medical maladies with no cures in sight. Above all, we need a President who understands morality. Understands that lying is not consistent with the Ten Commandments. That starting wars is not consistent with a good-neighbor policy. That science education does not allow the insertion of religious tracts. And that medical policy must include a respect for science, allowing approval of Plan B when scientists testify overwhelmingly in its support. And that people with diseases like Jenifer Estess can believe in an America that fights disease, leads the research, and does not place roadblocks in our scientists path on phoney moral platitudes with no relationship to reality.

America deserves better!

Bob