Lithium combined with Rilutek could slow ALS progression?
Another United States discovery, no this hot item comes from the Italians. I suppose any news is better than no news at all. Lithium has been circulated in the neruogolical fiields for about ten years and now it's the newest healer, well maybe for this week. Something is horribly wrong with research results verses dollars spent. If Rilutek was more effective we would not need this new Peter Pan theory using Pixie Dust to slow ALS progression. Seems to me this sort of distraction only keeps us in that revolving door spinning between Life and Breath. We need Uncle Sam to stop wasting tax dollars on agencies that take a disease and uses it to create weekly paychecks. How about creating one task force to work on one disease. Make them accountable for progress every quarter, no results, new team / new staff.
Like Lithium, ten years back we had another debacle that was called Myotrophin. Kyle Hahn led his fight against the FDA only to have Hope taken from him. Last week we saw the courage of Leo Green giving Hope to Lithium.
Today Kyle and Leo have been taken from us by ALS and the movie never ends, it goes on and on and on.
February 11, 2008
January 17, 2008
Lou Gehrig's Patients Get Their Bill Blocked
January 7, 2008 - by Donny Shaw - OpenCongress.org
The ALS Registry Act, S. 1382, has been frozen by Senate trickery. As a person coping with ALS my dream is to keep it on the front page. This century old disease deserves more than a whisper.
ALS, commonly known as Lou Gehrig's disease, is the most horrible disease in our modern times. ALS is the disease that takes a deadly toll on the body by a process of total muscle paralysis, which causes death in a very short time. While the amount of those being diagnosed is on the rise our numbers remain just low enough for science and the medical companies to turn and look away. ALS is the disease we like to whisper about. Reminds me of the homeless Veteran standing on the roadside with a cardboard sign that reads "Hungry, God Bless."
Senator Tom Coburn of Oklahoma is also a Doctor that thinks the Center for Disease Control collecting data on the variables of ALS is a waste of money. The ALS Registry Act was written and introduced four years ago. Endless hours by ALS Advocates and congressional time taken to approve and make sure it is acceptable has all been lost. The Senator found a way to kill the clock just before the other team won; Senate trickery called a "Hold."
Before adjourning for the year, Coburn vowed to put a hold on any bill that didn't meet a set of criteria that he outlined on his website. Apparently, this is one of the bills that didn't make the cut, but Coburn has not yet issued a specific explanation as to why. He's got a lot of explaining to do with this one -- it is co-sponsored by two-thirds of the Senate and the House of Representatives already passed their version of it by an overwhelming vote of 411-3.
The ALS Registry Act, S. 1382, has been frozen by Senate trickery. As a person coping with ALS my dream is to keep it on the front page. This century old disease deserves more than a whisper.
ALS, commonly known as Lou Gehrig's disease, is the most horrible disease in our modern times. ALS is the disease that takes a deadly toll on the body by a process of total muscle paralysis, which causes death in a very short time. While the amount of those being diagnosed is on the rise our numbers remain just low enough for science and the medical companies to turn and look away. ALS is the disease we like to whisper about. Reminds me of the homeless Veteran standing on the roadside with a cardboard sign that reads "Hungry, God Bless."
Senator Tom Coburn of Oklahoma is also a Doctor that thinks the Center for Disease Control collecting data on the variables of ALS is a waste of money. The ALS Registry Act was written and introduced four years ago. Endless hours by ALS Advocates and congressional time taken to approve and make sure it is acceptable has all been lost. The Senator found a way to kill the clock just before the other team won; Senate trickery called a "Hold."
Before adjourning for the year, Coburn vowed to put a hold on any bill that didn't meet a set of criteria that he outlined on his website. Apparently, this is one of the bills that didn't make the cut, but Coburn has not yet issued a specific explanation as to why. He's got a lot of explaining to do with this one -- it is co-sponsored by two-thirds of the Senate and the House of Representatives already passed their version of it by an overwhelming vote of 411-3.
January 6, 2008
Doctor, Senator, Deacon Kills ALS Progress
ALS commonly known as Lou Gehrig's disease is the most horrible disease in our modern times. ALS is the disease that takes a deadly toll on the body by a process of total muscle paralysis, which causes death in a very short time. While the amount of those being diagnosed is on the rise our numbers remain just low enough for science and the medical companies to turn and look away. ALS is the disease we like to whisper about. Reminds me of the homeless Veteran standing along the roadway with a cardboard sign that reads "Hungry, God Bless."
The person with the three identities is Senator Tom Coburn of Oklahoma. He is the Doctor that thinks the Center for Disease Control collecting data on the variables of ALS is a waste of money. The ALS Registry Act was written and introduced four years ago. Endless hours by ALS Advocates and congressional time taken to approve and make sure it is acceptable has all been lost. The Senator found a way to kill the clock just before the other team won; Senate trickery called a "Hold." No public explanation yet but our guess is the Doctor has more important items to deal with. Saving Lives and Money?
As a Deacon, you would think he might give testimony to Benevolence before he creates the false identity of a Fiscal Conservative. The ALS community is not asking for a handout, we just need to be counted. Simply connect the dots of this horrid century old disease, that's all.
The ALS Registry Act S.1382 is now on "Hold" frozen in the Senate and more ALS victims are left by the side of the road holding a cardboard sign that reads "Help, God Bless."
The person with the three identities is Senator Tom Coburn of Oklahoma. He is the Doctor that thinks the Center for Disease Control collecting data on the variables of ALS is a waste of money. The ALS Registry Act was written and introduced four years ago. Endless hours by ALS Advocates and congressional time taken to approve and make sure it is acceptable has all been lost. The Senator found a way to kill the clock just before the other team won; Senate trickery called a "Hold." No public explanation yet but our guess is the Doctor has more important items to deal with. Saving Lives and Money?
As a Deacon, you would think he might give testimony to Benevolence before he creates the false identity of a Fiscal Conservative. The ALS community is not asking for a handout, we just need to be counted. Simply connect the dots of this horrid century old disease, that's all.
The ALS Registry Act S.1382 is now on "Hold" frozen in the Senate and more ALS victims are left by the side of the road holding a cardboard sign that reads "Help, God Bless."
December 27, 2007
Grinch Holds Lou Gehrig (ALS) Patients Hostage
ALS patients nation wide are being held hostage this Christmas by a Grinch on Capitol Hill. His name is Tom Coburn, Senator from Oklahoma. The Wall Street Journal posted the front-page article on Dec. 21st and detailed how this Senator worked late while others adjourned for the Holidays. His scrooge style mission was to place a "hold" on selected bills, a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate. The bill held hostage is the ALS Registry Act S.1382. This legislation would authorize the establishment of an ALS Registry at the Centers for Disease Control and Prevention. The House of Representatives passed the bill on Oct.16, 2007 by an overwhelming 411-3 vote. The Senate H.E.L.P. Committee favorably reported the Senate version of the bill on Nov. 14, 2007 and more than two-thirds of the Senate has cosponsored the bill. The ALS Registry Act is needed to build on projects underway at the CDC and supported by the Congress and the Administration.
This bill was drawn up and introduced by Congressman Elliot Engel, N.Y. in 2004. When this bill finally becomes law it may take the CDC two years to collect the first of its ALS data. My question for Senator Coburn would be to tell me how many ALS patients would die in this five-year period. If we had the ALS Registry Act we would know the facts and much more Senator.
This bill was drawn up and introduced by Congressman Elliot Engel, N.Y. in 2004. When this bill finally becomes law it may take the CDC two years to collect the first of its ALS data. My question for Senator Coburn would be to tell me how many ALS patients would die in this five-year period. If we had the ALS Registry Act we would know the facts and much more Senator.
November 10, 2007
All Dressed Up and Nowhere to Go
When I was a teenager I remember a sign out front of a funereal home across from the Dairy Queen. The sign read; Today we lay to rest; Alfred P. Smith (Atheist) All Dressed Up and Nowhere to Go.Since ALS has robbed me of the ability to dress myself I leave everything to my wonderful wife. After a refreshing shower I remained in a trace as she dressed me for the day. It was a Florida perfect day and thought the time had come to do a little outdoor reading. After a while of sitting in the sun my wife brings out my last place Devil Rays ball cap. Dropping the book while turning the page I noticed I had on my boating shoes, fishing shorts, golf shirt and now the baseball cap. If you're familiar with ALS you should know that not one of these sports is possible for me anymore. I said outloud "isn't this just great, here I sit, All Dressed Up and Nowhere to Go"
June 25, 2007
What ALS has Taught Me
1. Patience
2. It isn't necessary to bite your nails.
3. Picking your nose is a memory.
4. Most doctors don't know anything about ALS.
5. Metamucil is my new friend.
6. The medical community is "big business" and their bottom line is profits.
7. If you really need to know something about ALS ask a Caregiver.
8. Some PALS have no sense of humor.
9. Some PALS do.
10. A good wife, spouse, makes life worth living!
2. It isn't necessary to bite your nails.
3. Picking your nose is a memory.
4. Most doctors don't know anything about ALS.
5. Metamucil is my new friend.
6. The medical community is "big business" and their bottom line is profits.
7. If you really need to know something about ALS ask a Caregiver.
8. Some PALS have no sense of humor.
9. Some PALS do.
10. A good wife, spouse, makes life worth living!
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