Thursday, July 31, 2008

Dr. No - Tomnibus Coburn

This Group is taking a deserved break from The ALS Registry Act, S.1382 / S.3297 the notorious Tomnibus Bill of the 110th Congress. We have been working overtime, behind the scenes, and think it best to calm down, reboot our laptops, and plan a strategy for September when our great lawmakers return.

We are NOT rewriting the original story of Dr. No. who may have fooled us once but next time around Dr. No will be defeated. We have faith because we have numbers, large numbers.

The ongoing fight for The ALS Registry Act , to be continued.

Friday, July 25, 2008

Victory for Veterans

Not always does ALS get a victory but we are grateful and give thanks this July of 2008. The thanks goes out to those who worked non-stop to get ALS a service connected disability for all veterans. Two years of hard work came to fruition that could benefit thousands of veterans who suffer from Lou Gehrig's disease. The U.S. Department of Veterans Affairs will grant a service-connected disability, the highest category of disability, to all veterans with ALS, (amyotrophic lateral sclerosis) a degenerative disease that affects veterans at a rate at 1.6 times the general population. You might say ALS has taken on a new face in the fight for the mysterious trigger that continues to stump the research world.

This special thanks involves a lot of people but mostly it started in the Navy and then circulated over to the Air Force. The ALS community salutes James Thew of the Navy and Gen. Tom Mikolajcik (retired) of the Air Force. Both men have ALS and have testified many times before congress telling them of the need for the military to recognize ALS as the new enemy. We also salute the ALS Association D.C. branch for orchestrating the latest hearing before the U.S. Department of Veterans Affairs. They worked closely with the South Carolina ALS chapter that Gen. Mikolajcik helped to form in 2006. Gen. Mikolajcik also helped to recruit the ears of Sen. Lindsey Graham and Rep. Henry Brown to reinforce this latest decision by the V.A. and we're so thankful these two congressmen really understand ALS.

Questions still circle this policy change and we only hope it works for all military ALS patients and families who have experienced life with ALS. More questions are: Will the VA contact deceased veterans families for compensation and education benefits? Will the VA make this retroactive to the date of the claim, or pay from the date of this policy change? Does the VA have enough staff to process these claims? How many veterans and survivors does VA expect to file new claims or re-open prior claims? Some are doubtful that the VA will contact veterans with prior denied claims. Time will tell but how much time do ALS veterans have?

Today we'll take this victory but this victory should NOT be the last. We have further steps toward expeditious attention and change to legislation that treats ALS as a critical orphan disease that has no CURE.

This disease does NOT believe in waiting, take that from one who knows.

Wednesday, July 23, 2008

So Coburn Was For It Before He Was Against It?

Let's take a trip down memory lane.

For years people who have been paying attention to the ALS problem in this country have worked hard to get our government to lend us a boost in finding the cause and cure by retaining some clues. The disease simply needs a roster of cases and pertinent data, and it would seem that the CDC would be an appropriate administrator. As says, "How can we connect the dots if we're not even collecting the dots?" The disease is still as fatal and mysterious as it was in 1939 when Lou Gehrig gave his farewell.

Finally in 2007, things began to happen. In October, the House passed the ALS Registry Act by a vote of 411-3. That's a slam dunk. In November, the Senate HELP (Health, Education, Labor, and Pensions) committee approved the ALS Registry Act with a unanimous bipartisan consent. That's a slam dunk. Let's take a look at that HELP committee membership (as you read through the list, you'll see some very respected names from both parties. Oh, look at the last name. Rub your eyes and read it again.) --

Edward Kennedy (MA) Christopher Dodd (CT) Tom Harkin (IA) Barbara A. Mikulski (MD)Jeff Bingaman (NM)Patty Murray (WA)Jack Reed (RI)Hillary Rodham Clinton(NY)Barack Obama (IL)Bernard Sanders (I) (VT)Sherrod Brown (OH)Michael B. Enzi (WY)Judd Gregg (NH)Lamar Alexander (TN)Richard Burr (NC)Johnny Isakson (GA)Lisa Murkowski (AK)Orrin G. Hatch (UT)Pat Roberts (KS)Wayne Allard (CO)Tom Coburn, M.D. (OK)

We find no record of Tom Coburn, M.D. (OK) speaking up in opposition to the ALS Registry Act that day. We find no evidence of any objections or concerns that could be aired out in person with his colleagues. Perhaps he wasn't paying attention. His committee approved of the ALS Registry Act with a unanimous voice vote. Maybe he's shy about speaking up in committee and decided to go with the pack.

Just before Christmas Coburn made the front page of the Wall Street Journal touting his ability to slap a hold on bills. Sure enough, he had slapped a hold on the ALS Registry Act. We could have had a very quick approval of this bill in the Senate before the end of last year, but instead he stopped it with the Coburn hold tactic. Talk about a quick flip-flop... or perhaps the hold tactic is easier for him than discussing differences in committee.

ALS wasn't the only disease that was stymied by Coburn. There is all kinds of health legislation that he has held under the guise of being a fiscal hawk.

So this weekend Senator Reid has rolled many of those held bills together to try to get them moving in the Senate. This plays right into the fiscal hawk's script. Will Coburn object now because each bill needs to be argued on its individual merits? Were it not for him, we could have done that last November, but perhaps he forgot.

Coburn's office is estimating a staggering $11 billion figure on this omnibus bill that he has caused. Of course, he will object to it vehemently. That's a lot of money, but it's less than 2 percent of the cost of the war in Iraq. That's less than a third of what we have paid in bailouts this year for private financial institutions. Some of us would like for our country to spend some money curing diseases and helping children and protecting our environment. Some of us don't mind $11 billion that will make our country a better, more humane place where lives won't be lost to diseases that should have been cured long ago. Some of us actually see an $11 billion investment that would move our great country in a positive direction. And we must not forget that Coburn is the guy who forced these bills into the Costco-sized package.

You don't speak for every taxpayer, Senator Coburn, and please pay attention at your next committee meeting.

Wednesday, July 16, 2008

The Grapes of Wrath part II

Oklahoma political Czar's put pressure on the Department of Agriculture to save 30,000 people in that state.

The panhandle is made up of three counties hit hard this year by a drought similar to the dust bowl of the 30's.
The U.S. Department of Agriculture listed Texas, Beaver and Cimarron counties as a disaster area, which makes local workers eligible for low-interest loans and aid. State Agriculture Secretary Terry Peach called for the declaration on June 5, but it wasn’t until three national politicians — U.S. Rep. Frank Lucas, U.S. Sen. Jim Inhofe and U.S. Sen. Tom Coburn, all Republicans — wrote letters to the USDA last week that the declaration was made.

In this particular case Coburn has come to the aid of his countrymen like a knight in dusty armor. This is so hard to believe given his record of one that has held back spending to any group, especially 30,000 folks caught in a drought of bad luck.

But Coburn is no hero. Far from it. In his three years in the senate, Coburn has earned the reputation of Dr. No, abusing the senate’s "Hold" privilege, a technique which allows senators to "object to bringing a bill or nomination to the floor for consideration", to prevent "the Senate leadership" from bringing matters to a vote. He's the senator who is against government spending and those dreadful attachments called earmarks.

Coburn is the same knight that last Christmas put another group of 30,000 on "Hold". I'm referring to the ALS Registry Act of 2007 (S.1382) that would allow the CDC to collect data on 30,000 coping annually with ALS. The ALS Registry Act creates a single nationwide patient registry for incidences of ALS (Amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, to improve ALS research, disease management and the development of standards of care.

The truth is the ALS Registry Act is a stand alone bill, not an earmark. Unlike the number of people affected by the Oklahoma drought, the national number of 30,000 for ALS is at best a terrible guess. "You cannot connect the dots if no one is counting the dots," S.1382 will start counting the dots.

ALS is a progressive neurological disorder that leads to paralysis and death, ninety percent usually die within three to five year. It is estimated that as many as 30,000 Americans have the disease at any given time. These patients are not asking for any type aid and are not threaten by a drought but worse are threaten by death. People with ALS die so quickly that there far fewer of them in our midst at any moment in time. That doesn't mean that the threat of this disease leaves our midst.

Join together with patients coping with ALS in an important cause. Please ask your state Senators for their continued support for the ALS Registry Act. Ask them to help us convince Sen. Tom Coburn to release his "Hold" on S. 1382. The ALS Registry Act is needed to build on projects underway in three test cities and is supported even by this Administration.
ALS patients are ready to be counted.
Please join our fight today!

Monday, July 7, 2008


Dear Friends,
Early in the morning of July 3, my brother Ben Byer lost his battle against ALS. He fought up until the end but his body did not match his spirit. Funeral services will be held on Tuesday, July 8 at 2:30 pm at Shalom Memorial Park, 1700 W. Rand Road in Arlington Heights, IL. The party that Ben and I were planning for July 17th, to thank all of you, our supporters and friends, will still happen and we welcome you there if you are in the Chicago area. In addition to celebrating the Chicago Premiere of Indestructible, we will celebrate Ben's life and the legacy he is leaving. He would not want it any other way. Our website has the information and we hope you will come to celebrate his life with us. I will continue to work toward fulfilling the mission of ALS Film Fund in raising awareness and change for this brutal disease in Ben's name, his memory, his spirit and his honor.
Sincerely, Rebeccah Rush
phone: 312-848-5919

Saturday, July 5, 2008

A Tribute to a man they called Blazeman

"Decision Must Be Instant - Commitment Must Be Total."

The fight and the story that truly lives on. Started by Ironman Jonathan Blais in 2005 and thanks to Mia Richter the ALS Warrior Poet carries on the tradition. Jon Blais died in May 2007 of ALS.
Jon was a 35 year old triathlete. In 2005 and after SIXTEEN AND A HALF HOURS of gut-wrenching physical, mental and emotional depletion culminated in one triumphant moment on the shores of Kona, Hawaii, in 2005. Jon Blais log-rolled across the Ironman World Championship finish line and heard the immortalizing words "You are an Ironman!"
In 2004 he felt his arms, shoulders and chest twitching and shrugged it off blaming pinched nerves from all his training. By 2005 he realized it was something more serious.
The diagnosis: ALS, or Lou Gehrig’s disease. The insidious progressive neurodegenerative disease affects nerve cells in the brain and the spinal cord, slowly shutting down the body’s muscular and neurological functioning, while cruelly keeping the mind intact.
"It’s tragic that my doctors gave me the same prognosis they gave Lou Gehrig 70 years ago: ‘Go home and get ready to die,’" says Blais.
He finished 2005. In 2006 he was in a wheelchair like he predicted and he passed away before the 2007 race.

Prior to being diagnosed with ALS, Blais was an avid triathlete and shared his passion for triathlon with activities such as mountain climbing and hiking. Blais applied his love for the outdoors to his profession, teaching students with special needs. Two years after his diagnosis in May of 2005, Blais founded the Blazeman Foundation, an organization dedicated to promoting awareness of and fundraising for those battling ALS. The foundation continues to grow and has expanded this year to include Team Blazeman, a group of athletes called "Blazeman Warriors" who have committed to raising awareness and funding a search for a cure for ALS… so others may live.
"Jon inspired Ironman staff, athletes and spectators on many different levels. From his outlook on life and the wisdom he exuded while battling ALS to his passion for Ironman, the impact Jon made will stay with us for the rest of our lives. Indeed, he fought the great fight, and we will miss him," said Ben Fertic, president of Ironman.
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig’s Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

For more info :
ALS Warrior Poet
War On ALS

Read More on Jon Blais
Read More at Triathlete Magazine
San Diego Magazine Artilce about Jon