Monday, December 29, 2008

NFL Playoffs - All Eyes Could Be On ALS


The Ravens made it to the playoffs, and a Raven staff member and former player is a big motivator for that team, and he has ALS. O.J. Brigance needs to be on every news show and sports show hyping the playoffs. When a strapping athlete is cut down by this disease, it speaks volumes about the need for us (and the us grows when a zillion football fans are watching) to figure out the cause and cure.


Should it be of concern that ALS might be an occupational hazard of professional football?

Here are some names (if you know of others, please submit them in the comments and we'll add to the list) --


Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Orlando Thomas
Wally Hilgenberg

This week provides a huge opportunity for some ALS advocacy. A team in the Washington, DC, area is in the playoffs and has a living PALS showing its players the meaning of courage.


Sleepy



P.S. Sleepy also sees a challenge that has plagued ALS advocacy efforts for years. Once a high-profile athlete or celebrity aligns with one of the many ALS not-for-profits for fundraising purposes, for some reason the others seem to drop the awareness opportunities that the athlete can provide on a big stage.

Ok, Packard Center, MDA, ALSA, MND Association, Extra Hands, ALSTDI, and others. Here is an opportunity to spread the word about a startling correlation of NFL players and ALS and a courageous PALS leading his team through the playoffs. The stage is big. It's time to be big enough for a big stage and know what to do with an opportunity... together or indivudually... but don't drop the ball. Just do it. It's not every week when you have a nation glued to the tube like this. We know you didn't plan for a Ravens playoff run in your annual p.r. plans, but you can be nimble and seize the opportunity.

Thursday, December 18, 2008

R-E-S-P-E-C-T


Aretha is singing at the inauguration in January.
Here's an idea. Let's get her to become engaged in the ALS cause and go back to DC in May. We could use her at Advocacy Day because ALS sure gets no respect.
Just a little bit would be an improvement.

Friday, December 12, 2008

David Niven Would Be Proud



From the Orlando Sentinel




Pilots Carol Ann Garratt of Ocala and Carol Foy of Texas shattered an around-the-world speed record that had stood for 20 years. They also raised $145,000 for research on amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. ... "That mission is accomplished," said Garratt, who spent 18 months planning and $15,000 of her own money on the trip so donations could go to ALS research. "But the ALS mission is ongoing until we find a cure for that disease." ... A flight log and more details on the trip can be found at ALSworldflight.com.

Here's a pic of PALS David Niven in his "Around The World In 80 Days" days. That champagne sure beats Ensure.

Tuesday, December 2, 2008

Everything Will Be OK

Patrick O'Brien is still hanging on, working hard to finish his documentary. It's such a beautiful story and looks to be an amazing film. He needs all the help he can get to leave a film for his son to know him through. If you think you can help, please visit the Patrick O'Brien Foundation . I am not the only big Fan of this Man. ALS is being documented endlessly with this talented eye veiwing the finder of his wideangle lens. This is truly one serious ALS patient and advocate. It's my hope his dream is realized and thousands more can be touched as I.


The latest message from Patrick:

Hello friends,I have recently been the subject of some wonderful press and wanted to share it with all my supporters. Jason Tomassini from our local paper, the Gazette, did a fabulous piece which ended up on the front page. Thank you to Jason for doing such a wonderful job! The article may be viewed online here .

Shortly after the Gazette article was published, we were contacted by CBS News and got a spot on the local broadcast. Take a look at the segment
here .

And finally, after much hard work, the trailer is online for all to see. Sundance may finally be on the horizon...

Thank you all for your continued support!

Love,
Patrick


Sunday, November 30, 2008

Where Is Our National Outrage?

http://www.dailyherald.com/story/?id=254410&src=110

People with a terminal disease resort to self-reporting their results on a spreadsheet. Why is that?

We have thrown billions and billions of dollars in the last few weeks at problems that affect our bank accounts and retirement plans and mortgages and cures for financial institutions and their executives.

For a disease that kills everyman, we have spreadsheets and volunteer efforts. It's not because those grass-roots volunteers think they're smarter than the medical establishment. It's because the establishment is slow and unresponsive. We should be ashamed.

Wednesday, November 12, 2008

IPLEX


While on my daily watch for something positive to shout about I came across this caregivers plea. This is Tatiana’s story so read on… I support this petition so people who want and need this drug can have access. I supported her, I hope you will to…

Six months ago my husband was diagnosed with ALS (Lou Gehrig’s disease). There is no known cure or treatment. Once diagnosed, the patient is essentially handed a death sentence. I would do anything to help him. I need a huge favor and your help in order to get another chance for my husband and thousands of other people with ALS another chance and hope. We cannot wait, every week every day counts. In 2006, the FDA approved a drug called IPLEX manufactured by Insmed. There followed a number of anecdotal claims stating that IPLEX was effective in slowing down progression and possibly reversing some of the effects of ALS, as well as HIV and burn victims..Unfortunately, Genentech took Insmed to court, for patent infringement. The case was settled in March 2007 causing IPLEX to be pulled off the market world-wide. Only a small study now exists in Italy because of the involvement of Italian Ministry of Health. These results are due in the Fall or early winter, and many positive results have been reported in the Italian media. The court system in Italy officially recognizes these positive results. From a statement on Insmed’s website http://www.insmed.com/iplex.php: “As part of this settlement, we are allowed to develop IPLEX™ for specific indications. ALS is not one of the permitted indications.” What can you do? We found this petition on the internet to “Allow IPLEX to be distributed to ALS patients and burn victims”. I’m asking you to sign this petition to help us reach our goal of 10,000 signatures to allow IPLEX to be distributed to ALS patients,The following is the link to this petition. http://www.thepetitionsite.com/1/allow-iplex-to-be-distributed-to-als-patients-and-burn-victims-big-pharma-protects-profits-instead
Thank you very much.

So if you have a moment, look at the site or head straight to the petition. We need access to every possible treatment that could save any life. It only takes a minute, but you could make a huge difference in the life of one family — and many others.

Tuesday, November 11, 2008

Why The Secrecy About ALS?

Here's an interesting experiment.

Go to http://www.healthjournalism.org/ to visit the site of the Association of Healthcare Journalists. That's the professional organization for all of those serious print and broadcast media journalists. Browse around. Try Resources, Tip Sheets. Use the search box to find materials about ALS... or amyotrophic... or Gehrig's... or motor neuron disease...

It's no wonder this disease doesn't get any attention. We've not left any clues or ideas for those with the power of the pen or microphone. Great Caesar's ghost!
Where is the ALS p.r. machine?

Friday, November 7, 2008

It's Your America. Here's A Change We Need!



http://www.change.gov/page/content/americanmoment


Since they asked, let's spread the word and let our next President know that we need change. We need to find the cause of ALS. That should be very do-able for a country that puts its mind and necessary resources to the problem.

That's change that will save lives and heartache and money.

Is there a more needed change? I think not.

Please submit your thoughts at the link above, and let's put America on a mission to figure ALS out. We have had 12 Presidents since Lou Gehrig died. Let the 13th know that we want to change the prognosis for ALS in his first term. Yes, we can... with his leadership and commitment.

Friday, October 31, 2008

Midnight Regulations, Anyone?


From ABC News

http://www.abcnews.go.com/Blotter/story?id=6146929&page=1

The "midnight regulations" are coming from the Bush administration. Do we need to be on the watch for anything that might be bad for the ALS cause? Do we need to plant some seeds for things that will help?

?????????????????????????????????

The clock is ticking.

Sunday, October 26, 2008

ALS Needs A Publicist

If only we had a talent as good at getting the word out about ALS as Mr. Levinson did for his clients.

From today's Washington Post --


Author Peter J. Levinson, 74; Music, Entertainment Publicist
By Matt SchudelWashington Post Staff Writer
Sunday, October 26, 2008; C09

Peter J. Levinson, 74, a music and entertainment publicist who represented a who's who of show business stars and who had a second career as a biographer of musical figures, died Oct. 21 from a fall at his home in Malibu, Calif. In January 2007, he had amyotrophic lateral sclerosis, or Lou Gehrig's disease, diagnosed.

In 50 years as a publicist, Mr. Levinson helped guide the careers of such stars as Rosemary Clooney, Jack Lemmon, Art Garfunkel, Peggy Lee, Joel Grey and Phyllis Diller. He handled publicity for television shows and movies, including "Kramer vs. Kramer," which won the 1979 Academy Award for best picture.

He was credited with pitching an idea about the television show "Dallas" that ended up as a Time magazine cover story in 1980.

Mostly, though, Mr. Levinson toiled in the often barren field of jazz publicity at a time when the music he loved was losing popularity. His clientele read like a jazz hall of fame, including such luminaries as Count Basie, Artie Shaw, Dave Brubeck, Billy Taylor, Mel Tormé, Ramsey Lewis, George Shearing, Chick Corea, Maynard Ferguson and Wynton Marsalis.

"I've been hiring publicists since 1936," bandleader Woody Herman once said of Mr. Levinson. "This guy's better than any guy I've ever had."

Jazz writers across the country grew familiar with Mr. Levinson's deep, radio-quality voice on the telephone, as he called to announce a concert appearance or the release of a new album by one of his clients. In a recent letter, he wrote that he could no longer speak and was losing the feeling in his fingers. Nevertheless, through the use of a computer, he continued to work until his death.

In 2001, after more than 40 years as a publicist, Mr. Levinson turned to writing, publishing a biography of the troubled trumpeter and bandleader Harry James. He knew James for more than 20 years and, in an interview with the Philadelphia Daily News, recalled his first encounter with him at a nightclub in 1958:
"I saw how sad he was the first day I met him. Seeing him with a bar girl sitting in his lap, I felt sorry for him. I saw the other side of stardom. He had everything, but he had nothing."
Critic Nat Hentoff called Mr. Levinson's book about James, "Trumpet Blues," "one of the very few biographies of a musician I have read that not only told me much more than I thought I knew but compelled me to listen right away to the music again."

Mr. Levinson also published biographies of music arranger Nelson Riddle and bandleader Tommy Dorsey. In his 2005 Dorsey biography, he described how Dorsey gave Frank Sinatra his first big break and how Sinatra modeled his demeanor after Dorsey's "dynamic presence, the unquestioned authority that he exuded, his mercurial temper, and his combativeness."
He also revealed how Sinatra was able to break a lifetime contract with Dorsey, by which Dorsey was to receive one-third of Sinatra's future earnings: Underworld thugs supposedly shoved a gun in Dorsey's mouth and handed him an envelope stuffed with cash. The episode is said to have been the inspiration for the "offer he couldn't refuse" scene in "The Godfather."
Peter J. Levinson was born July 1, 1934, in Atlantic City and began writing about jazz as a student at the University of Virginia in the 1950s. After graduating, he served in the Army and moved to New York, where he found a job in the publicity department of Columbia Records. One of his Columbia projects was the landmark 1961 release of the recordings of 1930s blues master Robert Johnson.

In 1962, Mr. Levinson became the publicist for singer Jack Jones, and after a few years he opened his company, Peter Levinson Communications. He had offices in New York and Los Angeles before moving permanently to the West Coast in the 1980s.

In 1986, Mr. Levinson worked to get the U.S. Postal Service to release a postage stamp featuring Duke Ellington, the first time a jazz figure appeared on a stamp.

Shortly before his death, Mr. Levinson completed a biography of dancer Fred Astaire, which will be published early next year.

Survivors include his wife, former "60 Minutes" producer Grace Diekhaus; and a brother.

Thursday, October 9, 2008

This Beats An Autograph


Many of us always had hopes that the "baseball President" would have taken an interest in Lou Gehrig's Disease, but that never happened.
Baseball has been very good to him financially, but he never seemed to click with an empathy for those with the disease that took the best of baseball's best.
He did click his pen and sign on the dotted line, today, though...

Statement by Press Secretary Dana Perino
White House News
On Wednesday, October 8, 2008, the President signed into law:
H.J.Res. 62, the "Native American Heritage Day Act of 2008," which designates Friday, November 28, 2008, as Native American Heritage Day to honor the achievements and contributions of Native Americans to the United States;
H.R. 1157, the "Breast Cancer and Environmental Research Act of 2008," which requires the Department of Health and Human Services to establish a committee to coordinate Federal research related to breast cancer;
H.R. 1343, the "Health Care Safety Net Act of 2008," which reauthorizes the Department of Health and Human Services Health Centers, National Health Service Corps, Rural Health Care, State Loan Repayment, and Primary Dental Workforce programs for fiscal years 2009 through 2012;
H.R. 3068, the "Federal Protective Service Guard Contracting Reform Act of 2008," which requires the Department of Homeland Security to issue regulations establishing guidelines for the prohibition of contract awards for certain guard services to businesses that are owned, controlled, or operated by an individual who has been convicted of a felony;
H.R. 3229, the "National Infantry Museum and Soldier Center Commemorative Coin Act," which requires the Department of the Treasury to mint and issue coins in 2012 in commemoration of the United States Army Infantry and the establishment of the National Infantry Museum and Soldier Center;
H.R. 4120, which expands Federal jurisdiction of crimes related to child sexual exploitation to include conduct using any means or facility of interstate of foreign commerce or in or affecting interstate or foreign commerce; makes it a crime to "knowingly access with intent to view" materials which contain depictions of child pornography; and adds crimes involving child pornography to the list of predicate crimes for money laundering prosecutions;
H.R. 5001, the "Old Post Office Building Redevelopment Act of 2008," which directs the General Services Administration to proceed with redevelopment of the Old Post Office Building in the District of Columbia;
H.R. 5057, the "Debbie Smith Reauthorization Act of 2008," which authorizes appropriations for each of Fiscal Years 2009-2014 in the amount of $151 million for the Debbie Smith DNA Backlog Grant Program; $30 million for the Sexual Assault Forensic Exam Grant Program; and $12.5 million for DNA training and education programs;
H.R. 5265, the "Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008," which renames certain Department of Health and Human Service muscular dystrophy (MD) research facilities as Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers and makes certain changes relating to research and coordination of activities regarding MD;
H.R. 5571, which extends through March 6, 2009, the Department of Homeland Security's authority to waive the foreign residence requirement under the visa program for certain foreign doctors who agree to practice medicine for at least 3 years in health care facilities in areas designated as having a shortage of health care professionals;
H.R. 5872, the "Boy Scouts of America Centennial Commemorative Coin Act," which requires the Department of the Treasury to mint and issue coins in 2010 in commemoration of the centennial of the founding of the Boy Scouts of America;
H.R. 6370, the "Oregon Surplus Federal Land Act of 2008," which requires the Coast Guard to transfer the Cape Arago Light Station and 24 surrounding acres of land located in Coos County, Oregon, to the Department of the Interior to be held in trust for the Confederated Tribes of the Coos, Lower Umpqua, and Siuslaw Indians;
H.R. 6460, the "Great Lakes Legacy Reauthorization Act of 2008," which reauthorizes appropriations through FY 2010 for projects to remediate contaminated sediment in the Great Lakes;
H.R. 6890, which extends through September 30, 2009, authority for the Secretary of Education to waive certain Federal financial requirements for school districts affected by Hurricanes Katrina and Rita, and provides financial relief for areas affected by storms in the Midwest or hurricanes in the Gulf of Mexico in 2008;
H.R. 6894, the "Defense Production Act Extension and Reauthorization of 2008," which extends until September 30, 2009, authorities under the Defense Production Act that address urgent industrial base shortfalls for technologies and materials that impact national defense requirements;
H.R. 6946, which makes a technical amendment to the New and Emerging Technologies 911 Improvement Act of 2008;
S. 496, "Appalachian Regional Development Act Amendments of 2008," which authorizes appropriations for the Appalachian Regional Commission through FY 2012; authorizes an economic and energy development initiative for the region; and extends the date on which the authorities of the Commission would cease to be in effect to October 1, 2012;
S. 1046, the "Senior Professional Performance Act of 2008," which provides senior-level and scientific and professional Federal employees the same opportunity for higher pay that is available to members of the Senior Executive Service and makes certain changes to the performance appraisal certification system;
S. 1382, the "ALS Registry Act," which authorizes the Department of Health and Human Services to create a data collection system and population registry for Amyotrophic Lateral Sclerosis and related neuron disorders;
S. 1810, the "Prenatally and Postnatally Disgnosed Conditions Awareness Act," which authorizes the Department of Health and Human Services to establish a grant program to collect and disseminate information regarding Down syndrome or other prenatally or postnatally diagnosed diseases and to coordinate the provision of support services for those who receive a diagnosis of one of those diseases;
S. 2482, which repeals a requirement to obtain a judicial license prior to conducting salvage operations off the coast of Florida;
S. 2606, which authorizes appropriations to the United States Fire Administration (USFA) for FYs 2009-2012 and authorizes various changes to USFA's training programs and activities;
S. 2932, the "Poison Center Support, Enhancement, and Awareness Act of 2008," which extends the authorization of appropriations for the Poison Control Center grant program, national toll-free number, and national media campaign programs related to poison control;
S. 2982, the "Reconnecting Homeless Youth Act of 2008," which reauthorizes Federal funding for grant program that provide services to runaway and homeless youth and their families; and modifies program requirements relating to eligibility, performance standards, and other matters;
S. 3560, the "QI Program Supplemental Funding Act," which makes changes to certain Medicaid and Medicare programs, including new program integrity provisions; and provides market exclusivity for certain antibiotics; and
S. 3597, which provides that funds allocated for the Community Food Projects program in FY 2008 will remain available in FY 2009.

Monday, October 6, 2008

Converting Religion to Science, Step One


by Steven Ertelt
LifeNews.com Editor
September 29, 2008

New Research Shows Adult Stem Cells Best Hope for ALS, Lou Gehrig’s Disease
Washington, DC (LifeNews.com) -- The following is from Dr. David Prentice, a fellow with the * Family Research Council: “Adult stem cells have been used in a rat model of ALS (amyotrophic lateral sclerosis; "Lou Gehrig's disease") to strengthen muscles and their connecting nerves. Researchers injected bone marrow adult stem cells carrying a gene for GDNF (glial cell line-derived neurotrophic factor), a nurturing protein for nerves. Previous work by the group had shown that transplanting neural stem cells that released GDNF into the spinal cord could protect motor neurons that degenerate in the ALS rat, but that the nerves still did not effectively connect with the muscles that waste away due to ALS. In the current study published in Molecular Therapy, the researchers were pleasantly surprised to find that when they injected the adult stem cells into muscle, however, the cells pumped out GDNF that helped the connecting nerves survive and maintain connection, and that this delayed progression of the disease and extended the lifespan of the ALS animals. The bone marrow adult stem cells had a slight effect on their own, possibly by releasing their own protective factors, but the effect was greater when they delivered the nurturing growth protein. While any human application is still in the future, the new study provides hope for treatment in a disease that currently has no effective therapy. An advantage of this approach is that muscle is easy to access and adult stem cells could be used from the patients themselves.”

* The Family Research Council (FRC) is a Christian right non-profit think tank and lobbying organization. It was formed in the United States by James Dobson in 1981 and incorporated in 1983. The group was designed to be a lobbying force for conservative legislation on Capitol Hill. In the late 1980s the group officially became a division of Dobson's main organization Focus on the Family, but in 1992 IRS concerns about the group's lobbying led to an administrative separation. Its function is to promote traditional family values. The current president is Tony Perkins.

Saturday, September 27, 2008

You Have A Chance To Do More Than Just Signing On The Dotted Line, Mr. President

The ALS Registry Act survived the ticking clock of the 110th Congress. Now it's on to President Bush for his signature.

This bill deserves more than a cursory signature with a commemorative pen. After all, ALS is a disease that steals the ability of people to write. Many can still shake your hand with strength, but they have lost the dexterity in their fingers to button a shirt or write a note or turn a key in a lock. As those manual abilities slip away, they never come back. Lou Gehrig's is a cruel disease.

Mr. President, how about signing that bill with some empathy to the people who will finally be counted by the ALS Registry? How about trying one of the hundreds of writing implements that people with ALS rig up so that they can still write? Some are simply fat pens with grips intended for small children. Some are literally pens strapped to their hands and wrists. Give it a try. It makes ALS very real to try the equipment that ALS requires. A White House photo op with some people with ALS showing you how to use one of their implements to sign the bill would speak volumes to the reasons why this registry is so important.

Wednesday, September 24, 2008

Objection........Objection..........



The ALS Registry Act S. 1382 Passes the Senate

This essential legislation was introduced to the House of Representatives of the 109th Congress, Oct. of 2005. Letters, testimonies and dialogue were needed to move this bill along the painful process of becoming law. The task becomes more grueling when questionable numbers of relative incidence keeps this horrid disease off the radar. It took sound relationships of constituents from across the entire fifty states to gain sponsorship and approval of this pending bill. Yet it would go on to the next Congress, another bill, higher huddles, more words with more talk. Hundreds, traveling disabled to Congress for three years to explain their personal heart breaking stories. Testimony to Senate Committees from the critically ill, letters from widowed spouses and still more and more huddles.

Finally, after years of negotiations The ALS Registry Act, S. 1382 came to the Senate floor grouped together with nine other health related bills. These bills all on "Hold" by Sen. Tom Coburn with one more final attempt at passage before this the last 110th congressional session before the election. Sen. Harry Reid asked for unanimous consent without objections on nine bills and was met with nine objections by Sen. Coburn. The ALS Registry Act, S. 1382 was the 10th and last bill read before the Senate President asking for any Objections.

Not a sound was heard. It was three seconds of silence, then the sound of the gavel and S. 1382 was finally going to become law. The birth of this bill would help find a cure for ALS and never again would a patient be buried with valuable clues to this horrible disease. It was the best three seconds of silence this ALS patient ever heard.

Saturday, September 20, 2008

The Plot Thickens

From Politico - The Crypt
http://www.politico.com/blogs/thecrypt/0908/Coburn_Omnibus_stakes_increase.html


September 19, 2008
By Ryan Grim 05:47 PM
Categories:
Leadership
Coburn Omnibus stakes increase

The stakes in the showdown between Senate Majority Leader Harry Reid (D-Nev.) and Sen. Tom Coburn (R-Okla.) continue to go higher.

Congress must pass a continuing resolution (CR) to fund the government within two weeks, by October first, or face a shutdown in a precarious time.

Coburn is holding up passage of a bundle of broadly supported bills that Reid wants to see passed before the session adjourns, arguing that new spending isn't offset or that the bills duplicate efforts already underway.
Reid has tried to move the package — known as the Tomnibus or the Coburn Omnibus — in recent months but has been thwarted by Coburn, who was able to persuade enough of his Senate Republican colleagues to oppose the move.

But Reid has a powerful weapon in his arsenal: He can bring up the Coburn Omnibus before getting to the CR. And that’s just what he plans to do. “We have been planning to do Coburn before the CR for a week,” said Reid spokesman Jim Manley in an e-mail. Next week will be taken up mostly by an energy-tax-extenders bill and work on the Wall Street rescue package. October first comes on the Wednesday during the week after. Coburn would then be forced to choose between caving in and tying the Senate in knots — which would shut down the government if the CR couldn’t come up for a vote by the deadline. A government shutdown, however, is unlikely in the extreme given the perilous financial situation. Indeed, world markets rebounded today on faith that the U.S. government was riding over the hills to the rescue — not an ideal time for it to shut down, to say the least. In order to avert it, then, Reid could pull the package if it appeared Coburn wasn’t blinking — or Coburn could acquiesece if it seemed that Reid would take it all the way.

Coburn, for his part, looks forward to the fight. "Dr. Coburn would be happy to debate why we need to shut down the government to protect chimps and botanical gardens," said Coburn aide John Hart, referring to some of the bills in the package.


How about a few hundred people with ALS lining the entrances to the United States Capitol with signs that they aren't exactly chimps or potted plants? All of Coburn's talk about the sanctity of life seems a little hypocritical at the moment. I hope that his fellow Senators find his current tatics as offensive.

Thursday, September 18, 2008

How Offensive Can One Senator Be?

Click here to see Coburn's new commentary on the S.3297 omnibus bill that includes the ALS Registry Act.

ALS isn't funny, Senator.

ALS isn't a barrel of laughs, Senator.

ALS is important, Senator.

ALS kills people, Senator.

ALS steals loved ones from families, Senator.

ALS is a cruel disease, Senator.

You're not cute when you try to make silly jokes about the bills you have held, Senator.

Your respect for the sancity of life is less than impressive to those with ALS who might view your website, Senator.

Were you not paying attention the day they covered ALS in medical school, Senator?

Wednesday, September 17, 2008

Putting "Earmarks" Into Perspective

People who have seen ALS in action do not understand how one Senator's personal war against things he calls "earmarks" has been allowed to block any progress at gathering and retaining the clues that may finally help solve the mysteries of Lou Gehrig's Disease.

Last Friday on Washington Week, journalist Jackie Calmes of the Wall Street Journal made an interesting observation. From the PBS transcript:



MS. CALMES: Job training and trade adjustment programs, all of these things - when they talk about, on the Republican side in particular, about being - freezing spending. And I guess it's here, I should mention. All this attention to earmarks, if you wiped out every earmark on the books and that would of course include things that almost everybody from Right to Left would agree are worthwhile projects, it would amount to a rounding error, a footnote in the size of the deficit. It would not get you anywhere.

________________




So this week if Coburn starts his pontificating abour responsible spending and pork and earmarks and once again tries to stop S. 3297 (which contains the ALS Registry Act among other bipartisan legislation that he has blocked), perhaps he would supply us with a bar chart to scale to show us exactly how much the ALS Registry Act will really add to that deficit bar that he has enabled. It will take a really tall chart to get that deficit bar to fit, and he'll need a very fine pen to put the drop of ink on the bar that will represent the cost of an ALS registry.

He doesn't object to every kind of spending, just the kinds that give him easy air time to sound like a heroic fiscal hawk. He's reminiscent of an eccentric who spends a fortune on a lavish dinner in an expensive restaurant and then decides to save some money by not tipping the valet parking attendant. All show and no meaningful action.


__________
Senators, please pass S. 3297 NOW!
__________

Tuesday, September 16, 2008

The Coburn Sucker Punch May Not Work Too Well With Oprah

Oprah has millions of viewers emailing their Senators to ask for passage of S. 1738, the Combating Child Exploitation Act... one of the bills that Coburn has held hostage (along with the ALS Registry Act) with his hold tactic.


From The Hill

Senator No is facing his toughest foe, Senator O
By Alexander Bolton
Posted: 09/15/08 08:07 PM [ET]

...Coburn initially blocked it because it would have authorized nearly a billion dollars over eight years to fund a law enforcement crackdown on child exploitation. Coburn has insisted that new government programs be offset with spending cuts, a budget-saving device Biden’s bill lacked. Coburn now wants Biden’s revised proposal paired with Republican legislation that would give law enforcement greater access to the online records of suspected sexual predators.

He questioned Winfrey’s political objectivity.“I’m concerned that Oprah’s program only highlighted one half of the solution – the half supported by the presidential ticket she has endorsed. While I support the right of celebrities to use their platforms to advance partisan goals, Oprah’s viewers deserve to know all of the facts,” Coburn said in a statement.

Reid bundled the Biden bill with nearly 35 other bills that Coburn has used Senate rules to block into a package known as the Coburn omnibus. Reid fell eight votes short of moving the package through the Senate in July. In a surprise, Reid’s aides have told fellow Democrats he will try again this week — a mere six weeks after Coburn successfully blocked it previously.

Coburn has threatened procedural tactics to block dozens of relatively non-controversial bills during the 110th Congress.The strategy has proven effective because Democratic leaders are not willing to waste days of floor time filing motions to proceed and holding votes to cut off debate to pass bills that have little national name recognition but are nevertheless very important to smaller constituencies. ...




Now is the time for us to follow Oprah's lead and let our Senators know that there is another important issue that needs action now ... S. 1382 The ALS Registry Act... or pass it as part of the package S. 3297 The Advancing America's Priorities Act. Here is Oprah's Call to Action.

Oprah is getting the Senate's attention about one of the important items that Coburn has single-handedly stymied. Your two Senators need to be reminded that there is another important item -- The ALS Registry Act -- that needs our national attention, too. Coburn doesn't always know best, and this is America, not Coburn's personal fiefdom. Please write your Senators today!


__________
Senators, please pass S. 3297 NOW!
__________

Thursday, September 11, 2008


In between listening to salvos fired by those running for president, I happened across a reference to an interesting case related to ALS. A rather lengthy pleading has been written by a fellow PALS (person with ALS) which seeks pro bono help from the dean of the DePaul University Law School in Chicago.

Central to his pleading is a therapy that is showing good results in motor neuron diseases, including ALS, in Italy. Unfortunately for those of us not living in Italy, a patent infringement suit is keeping the drug from being available in the United States. It is available in Italy because a law suit ruled in favor of the PALS which the Italian government now makes the drug Iplex manufactured by Ismed available to all who are prescribed.

In the US, on the other hand, Genentech/Tercia sells Increlex, a drug similar to Iplex but shown not to have the benefits. As a result of the Genetech/Tercia suit, Insmed is prohibited from selling Iplex in the US.

Caught in this dilemma are the over 30,000 ALS patients now fighting this incurable disease here in the United States.

I have trouble keeping all the I-sounding drugs and companies straight. I really recommend that a read of the full document prepared by Edward Esparza. Then think of ways that we can free up one of the very few therapies that have shown some benefit in slowing the progress of this deadly disease. Maybe some other lawyers out there would find this an excellent pro bono case.

http://www.inspire.com/groups/als-advocacy/discussion/iplex-1/

When The Rubber Hit The Road

ALScounts has an item this morning about a new government registry that tracks automobile safety issues. Safety dots must be reported by industry. Information may enable consumers to make safer decisions and aid in the prevention of some accidents.

Evidently this all started with an act of Congress in 2000. The Senator formerly know as Congressman Coburn was a member of the House when the legislation was passed there. Here's the scoop --

So a government registry of data on prevention of tire problems got an easy pass through the House (with Coburn's consent) while a registry of data on a mysterious fatal disease is not appropriate for for legislation in this man's mind. Why is that?
__________
Senators, please pass S. 3297 NOW!
__________

Friday, September 5, 2008

There's No Haagen And There's No Daz, But There's A Ben and There's A Jerry

In yesterday's WSJ, we learned that Ben and Jerry's is promoting a governmental national registry to help them guarantee that there will be no ingredients in their products sourced from cloned livestock.

A few have made such a pledge. The center said eight companies it surveyed said they wouldn't knowingly use food from the offspring of clones. These include Seattle-area organic retail cooperative PCC Natural Markets and Unilever's Vermont-based ice-cream maker Ben & Jerry's, which is pushing the government to create a national registry for clones and their offspring.


If Ben and Jerry can pull this off to protect our Cherry Garcia and Chunky Monkey, perhaps we can enlist their help to get a registry for human beings with ALS.

__________
Senators, please pass S. 3297 NOW!
__________

Sunday, August 31, 2008

Take A Chance, Take A Chance...

Which candidates can be big enough (and smart enough) to see an unusual opportunity in the next couple of weeks?

Candidates are busy distinguishing themselves from their opponents. That's code for trying to sling the zingers that will make the other party look bad. It's also one of the root causes for all the polarization that we have in Washington, and the polarization leads to the gridlock, and the gridlock keeps America from accomplishing some very simple good things.

The ALS Registry Act became a victim of a far-right verbal war against pork barrel spending. A single Senator used it as a step-stool to his bully pulpit that distinguished him not only from the other party, but also from many in his own party. Our legislative process has a procedural rule that he used (or abused depending on your viewpoint) to control the agenda.

There are three influential Senators running to lead our nation for the next four years. Two of them (McCain and Biden), one R and one D, are co-sponsors of the ALS Registry Act. Seventy-five more of their peers also co-sponsored it.

This is an exquisite opportunity for two influential Senators to show us what all that talk about reaching across the aisle really means.... now. Senator McCain and Senator Biden, now is the time to step forward and get something done between your bus tours. The Advancing America's Priorities Act now holds our hope of finally having an ALS registry for Americans who are killed by this mystery disease. Now is the time. Before the election, show us what you can do in a bipartisan way. The current gridlock wastes something much more precious than pork. It wastes lives. Yes, this is a sanctity-of-life issue.

Senators, talk is cheap. Show us what great Senators can do. Show us what all the bipartisan rhetoric can mean in real life. Energize the electorate.











Thursday, August 28, 2008

Harry I am with you!


No matter how old and wise I pretend to be, I cannot pass up an opportunity to be a little crass.

I came across this photo of Senate Majority Lead Harry Reid the other day and opined that it was taken in response to Sen. Dr. Coburn's contribution to passing a package of legislation to support the ALS Registry, the Reeves Paralysis Fund to name only two.

I could not help but thank Senator Reid for reflecting my thoughts about the good Senator Doctor Coburn.

Thursday, August 21, 2008

What Happened to my GOP




"Compassionate Conservative." "Fiscal Conservative." "Social Conservative." "The Grand Old Party / The GOP." Growing up I heard those terms all too much and I search today for their value. My Dad was a GOP guy and so very proud of it. My Dad also died of ALS, Lou Gehrig's disease and that was 20 years ago. Nothing has changed with ALS, there still is no cure and the deaths are on the rise. As my Dad reads the news today I'm sure he is disappointed with his "Grand Old Party." I'm sure he would say, "why the lies, why the debt, why the mess, why all the suffering."
In 2004 my Dad witnessed another disappointment. That was the year, at age 54, I was diagnosed with ALS. That was the year I found there was no help for me as well. I was shocked to learn that there were ALS groups to help my wife and I adjust. That was the kind of help my Mom and our family didn't have. Different than the year my Dad died, we found support groups, care specialist, better therapies, but still no cure.
In 2004, I learned of the ALS Association that was advocating a new bill in congress that would start to collect data on the occurrences of ALS. They called it the ALS Registry Act to help researchers and even though my Dad could not be counted, I could. I took up the cause with great passion and in just three years something good for ALS was about to happen. ALS patients, some 30,000 at last, would have a little hope in breaking down the barrier of an ALS cure.
In December 2007 our hopes were halted by a GOP guy, a "Compassionate Conservative Doctor," by the name of Sen. Tom Coburn of Oklahoma. Sen. Coburn had put S.1382 on "Hold" and no one but he could ever release it. Coping with ALS is the worst of all diseases but being part of a campaign to punish the U.S. for spending is not the compassion my Dad once believed in. I am positive my Dad is very disappointed at the spending the GOP has been part of and the selfish action of this one mans barricade against hope. I am also positive my Dad holds himself responsible for my ALS. Now my children live each day in fear of Familial ALS.
One last chance, on July 28, 2008, the Senate voted to bring up a vote on a package of 34 of the 90 bills being held by Sen. Coburn. Yes, S. 3297, Advancing Americas Priorities was a cloture vote that was 8 Ayes short and failed with 52 Ayes to 40 GOP Nays. One senator said these bills could wait. He obviously has not spent a day in a wheelchair or has a loved one dying from ALS. To us, time is our enemy and has a whole different meaning when you have under five years to live.
I'm sure my Dad is disappointed and wonders what has happened to his GOP.

Wednesday, August 20, 2008

Doing What We Do Best?

In yesterday's Wall Street Journal there was a revealing article regarding the 110th Congress. WSJ

Barring a burst of legislative activity after Labor Day, this group of 535 men and women will have accomplished a rare feat. In two decades of record keeping, no sitting Congress has passed fewer public laws at this point in the session -- 294 so far -- than this one. That's not to say they've been idle. On the flip side, no Congress in the same 20 years has been so prolific when it comes to proposing resolutions -- more than 1,900, according to a tally by the nonpartisan Taxpayers for Common Sense.

With the mostly symbolic measures, Congress has saluted such milestones as the Idaho Potato Commission's 70th anniversary and recognized soil as an "essential natural resource." As legislation on gasoline prices, tax fixes and predatory lending languish, Congress has designated May 5-9 as National Substitute Teacher Recognition Week, and set July 28 as the Day of the American Cowboy.

Ok, so we know that the House and Senate are good at passing back-slapping, fluffy resolutions. Let's work with that since they've not been able to pass an ALS Registry Act. How about having a resolution passed that declares ALS a Terrorist of a Disease? Who could argue with that? Please hold that thought.

In this morning's Washington Post, there is an article on the data being gathered and retained on U.S. citizens' land border crossings. It's amazing. The Department of Homeland Security has an integrated source of information that includes all of the car, truck, bus, and train passengers moving between the U.S. and Canada or Mexico. Washington Post


The federal government has been using its system of border checkpoints to greatly expand a database on travelers entering the country by collecting information on all U.S. citizens crossing by land, compiling data that will be stored for 15 years and may be used in criminal and intelligence investigations.



Do you see the possibilities here? Pile our patients into vans and let's head to Canada or Mexico for a day, and make sure that the border crossing folks note that the people have the official Terrorist of a Disease.

OK, Senators. Everything in life is difficult for people with ALS. Clearly our country sees value in gathering and retaining data in order to find threats in our midst. Clearly our Senate can pass legislation, albeit much of it is of the fluffy resolution variety.

Please sit down and do something serious in September and pass the ALS Registry Act as part of the Advancing America's Priorities Act. It will even help with gas prices since our thousands of people with ALS won't be wasting fuel crossing the borders in order to be entered into a database.

Sunday, August 17, 2008

Everybody Talks About It. Nobody Does Anything About It.

Did you notice Senator Reid's comments on the floor of the Senate when he was trying to win the vote to vote on the Advancing America's Priorities Act S. 3297? Lou Gehrig's Disease was front and center as a reason to pass that act. The package includes legislation on paralysis, strokes, vision, maternal medicine, etc., but ALS -- Lou Gehrig's Disease -- was the poster health issue in that package. Its "awful" factor sits atop a long list of other serious health issues.

Did you notice Senator Obama's comments during the Rick Warren interviews this weekend? When the very predictable topic of stem cell research came up, Senator Obama specifically cited Lou Gehrig's Disease as one of the awful diseases that could be benefit from stem cells. Why do Senators seem to know that Lou Gehrig's Disease is one that America needs to deal with, yet they've not done something simple like passing the ALS Registry Act to expedite the search for clues?

Senator Obama was not one of the 79 co-sponsors of the ALS Registry Act. Perhaps he could have explained that when Reverend Warren asked him about a time he went against the grain.

Neither Senator Obama nor Senator McCain bothered to vote on the day the Senate voted not to vote on the Advancing America's Priorities Act. So much for leadership.

Senators talk about Lou Gehrig's Disease, but what do they do about it? Talk's cheap. Show us what you do.

Monday, August 11, 2008

Who Can't Sleep At Night?

Are any of the Senators who voted to stay on energy and not vote on the Advancing America's Priorities Act losing any sleep? Since they failed to deliver either, they should be.



Is the Senator who sucker-punched the ALS Registry Act losing any sleep? Since he used it for his own fiscal superhero schtick and didn't bother to discuss it in his own committee, he should be.



People with ALS lose a lot of sleep. It has to do with breathing and the inability to do simple things like tossing and turning that these Senators can take for granted.

p.s. Sorry to put two pictures in this blog entry, but it's hard to find a picture that includes both Senate leadership and Coburn. Go figure.



Friday, August 8, 2008

2008/08/08 - The Day Eyes Are On China

As you watch the Olympic coverage, think about Mao. Regardless of what you think of him, he carried incredible power and influence. Even one of the world's most powerful men couldn't escape the fate of motor neuron disease.

He died 32 years ago. Surely his fate would have been different today, you say? Nope.

Wednesday, August 6, 2008

Sen. Coburn speaks to OKC Rotary Club




The new Senate crusader against Jurassic Pork has become a spokesperson for just about any topic. On the war Sen. Coburn states; "In Iraq we have seen phenomenal change in less than 12 months over there. The fact that they changed tactics and strategy and it has been highly successful and you see that in the economics, you see that in fatalities, you see that in statistics, you see it in terms of freedom opening up, you see it in casualties, even in the traffic. In every way the surge has been successful. We have had a see change in the last fifteen months."

Thank you Sen. Coburn, it is refreshing to know that after $500 billion US dollars we finally see something.

Make no mistake Sen. Coburn's rise in the polls was made larger on the senate floor, July 28th, 4:00 PM. That day was the showdown in the senate created by Sen. Reid. on a motion for a cloture vote on S. 3297 which contained the ALS Registry Act S.1382 on "Hold" by Sen. Coburn. His followers the last two weeks have praised him for the spanking he give Sen. Reid. That day the 52-40 vote put ALS, (Lou Gehrig's disease) further away from possible research and the hopes for any cure.

What worries me, is while the country thinks we have a crusader against pork, we really have someone willing to block any topic and in this case he has aided to block ALS without debate. For example, Don Lambro of the Washington Times this week described that S. 3297 was designed to contain some yums yums. He accused Sen. Reid of adding bills that contained some good things, proposals to help victims of paralysis and ALS / Lou Gehrig's disease and to fight drug use. "These sweeteners were added to make the lard go down a little easier". Mr. Lambro failed to mention that Sen. Reid was the one who introduced the ALS Registry Act not this year but in 2004. Mr. Lambro, ALS is far from sweet.

Mr. Lambro explained all the worst bills with dollar amounts but failed again to explain the seriousness of the ALS Registry Act. Maybe I shouldn't blame Mr. Lambro, he obviously is not familiar with ALS and ALS patients are not equipped with individual press people or an organization willing to take on the senate crusader and tell the public the real facts.

By the end of the August vacation, ALS will have claimed another 525 lives.

Coburn Fights Tears Regarding Military

From Michael McNutt at NewsOK.com

U.S. Sen. Tom Coburn, fighting back tears Tuesday when asked about U.S. troops in Iraq, called the success they achieved the past year "nothing short of phenomenal”...

Perhaps Senator Coburn should make the effort to meet a few veterans with ALS (they're not hard to find, unfortunately). That should bring him to tears, too.

Sunday, August 3, 2008

A funny thing happened on the way to the Senate

A funny thing happened to the ALS registry on its way to becoming a law. It ran into politics. If it weren’t so pathetically sad, it would be laughable, but I am slowly learning that anything connected to ALS is hard. Well, that’s not true; the people I have met through my various ALS associations are probably the easiest people to deal with. I’m sure it’s because everyone with ALS or caregivers of people with ALS have their priorities suddenly aimed in the right direction…whatever it takes to make this disease easier, that’s what needs to be done.

The ALS registry would do that. Everyone who deals with ALS on a daily basis knows that. It would help to direct research; it would help to point to trends that might lead to treatment and cures. It wouldn’t fund research, but just give scientist a clue as to where to look and where to begin searching. Senator Coburn stopped all that…in so many ways. He voted out of the Senate H.E.L.P. committee only to place a hold on S. 1382 on the Senate floor. He got more press that way. Bills are held every day in committee, but no press. When you hold a bill on the Senate floor, and pork barrel spending, it gets press. But it wasn’t just the ALS registry he held; many other good and decent bills suffered the fate of the “Coburn hold”. His brand of politics is unlike anything the Senate has seen before.

After 7 months of hold limbo land, suddenly ALS patients, caregivers and advocates had hope again. The registry was being bundled into S. 3297….a compilation of bills that had strong bipartisan support and that was a shoe in to pass…or so everyone connected with ALS thought. But then, politics reared its ugly head.

On Monday, July 28th, S.3297 was brought up to a cloture vote. 60 yes were needed for cloture. An yes vote for cloture would bring the bill to the Senate floor for debate, and then a vote to pass it, and then …on it’s way to the President. Wooo-hooo!

However, politics. The Senate was in the middle of a bitter, bipartisan debate about energy…gas prices, energy market speculation, and to drill or not to drill for oil and gas.

That bitter debate got in the way of doing what was right for many many Americans. S.3297 did not get its 60 votes that were needed and the bill was not brought to the Senate floor for a vote. It wasn’t because S. 3297 didn’t have full bipartisan support…it was because of politics. The politics of the Republicans wanting certain provisions in the energy bill. The politics of the Democrats not wanting those provisions in the energy bill. The politics of the Senate steeped in age old tradition of debate, and time enforced rules.

What was lost on that hopeful Monday was the fine art of negotiation and compromise, which has also been an age old tradition of the Senate. Furthermore, it was lost for the rest of the week, and the Senate adjourned without an energy bill and without passing S. 3297.

At this point in my life, I don’t care where we get our energy from; oil, gas, wind, soybean, corn or sage grass. That may sound glib, but it is the truth. You see for me it is simple, the thing that matters most to me right now is not energy or even politics, it is ALS. ALS is first and foremost in my life. And for now, energy and politics are standing in the way of potentially bringing the ALS registry to fruition, and potentially bringing a cure to those with ALS.

So, just as living with ALS, I jump into another world where everything seems hard. Politics. When the Senate returns in September, I want the fine art of negotiations to replace the art of politics. I will spend my “August Recess” contacting my Senators and urging them to “negotiate” instead of “politic”. Maybe then, once compromise is reached, S. 3297 will make it to the Senate floor, be voted on and passed. Then the only thing funny we might hear about the ALS registry act will be the glorious sound of PALS and CALS laughing and rejoicing. With passage of the registry act, after 67 years of “ALS status quo” things could change. PALS and their CALS negotiate and compromise with this disease every day. In September, it’s time for the Senate to do the same...negotiate and compromise. Negotiate and Compromise.

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 http://www.alscounts.com/ 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

INDESTRUCTIBLE


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
email: alsfilm@gmail.com
phone: 312-848-5919
web: Indestructible.com

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

Saturday, June 28, 2008

People With ALS Are Tired of Being Thrown Under the Bus, Senator Coburn


By Ryan Grim

Reid spokesman: GOP climbing aboard Coburn Omnibus

Jim Manley, spokesman for Senate Majority Leader Harry Reid (D-Nev.), responds to Coburn's threat of a "rough time" if Reid doesn't allow debate and amendments to the "Coburn Omnibus." "The idea that Sen. Coburn is talking about the traditions of the Senate is ridiculous," Manley writes in an e-mail. "Look what happened last time we did this. Sen. Coburn held up action on dozens of bills for narrow, personal reasons, demanding debate and four amendments. These bills were held up for months; the Senate had to waste precious time to allow him to offer a few amendments. Each amendment failed by overwhelming bipartisan margins (63, 76, 67, 73 votes against), and the final bill passed 91-4 (Coburn, DeMint, Vitter and Inhofe being the only Nos). That is not debate and amendment; it is abuse, obstruction and delay," he adds. "Things have gotten so bad that Republican senators have approached Sen. Reid to ask that their bills be included in the package."

No Splash?

How many people noticed that on the "longest" day of the year in the northern hemisphere, the world was supposed to be made aware of ALS (Motor Neuron Disease). The spark of caring was to have been turned into a fire of making a difference. You hadn't heard about this?

Isn't it ironic that on the same day the media were full of articles on the U.S. Olympic diving trials where the goal is to enter the water with nary a splash?

No splash is good in diving. No splash is bad for any effort that involves the word awareness.

Keeping in mind that the raw score is multiplied by the degree of difficulty (which isn't all that tough in the age of electronic communications), the five judges score ALS/MND Global Awareness Day 2008 -- 0.0, 0.0, 0.0, 0.0, 1.0 (one judge liked the poster just a little).