ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, November 19, 2008

Another Veteran - Randy Saubert - Featured in Denver Post

http://www.denverpost.com/news/ci_11017787

This is a very informative piece that should cause some outrage and action.

By Jason Blevins in the November 19, Denver Post --

They were told they were crazy. Statistical anomalies. Whiners. This week — after enduring 17 years of baffling and incurable ailments they blamed on exposure to nasty chemicals and untested anti-nerve-gas agents— veterans of the Persian Gulf War were told they were right.
Colorado's veterans of Operation Desert Storm feel justified after a congressionally mandated panel this week announced that the mysterious and often maligned "Gulf War syndrome" was in fact a legitimate medical condition. The panel concluded the syndrome was most likely associated with a combination of anti-nerve-gas pills and exposure to pesticides.
"I feel vindicated, but I'm angry. This is so long overdue," said Denise Nichols, a 57-year-old nurse who served for six months during Operation Desert Storm and has spent the past 17 years traveling between Denver and Washington, D.C., to advocate for soldiers suffering from Gulf War illnesses.
"Why did it take so long to listen to the vets and their families? . . . Why have they denied benefits and hurt people and let families fall apart and have soldiers go bankrupt seeking help?"
The 450-page report from the Research Advisory Committee on Gulf War Veterans' Illnesses points to evidence that "strongly and consistently indicates" a combination of anti-nerve-gas medicine — pyridostigmine bromide pills — and pesticides used to ward off desert insects — permethrin and DEET — is linked to Gulf War illnesses.
The report supports the estimated 210,000 soldiers who endured a variety of unexplained ailments after their tours of duty: fatigue, headaches, joint pain, rashes, breathing difficulty, forgetfulness, circulation problems and cardiac troubles.
But that support comes as waves of thousands of injured Iraq war soldiers are flooding Veterans Affairs hospitals with traumatic brain injuries and missing limbs.
"I don't know where this will lead, because we have a whole other set of problems now," said Pueblo's Patricia Biernacki, a 38-year-old mother of two boys who spent years seeking help for neurological and digestive issues after her six-month tour as a Navy Reserve corpsman in Bahrain.
The Department of Veterans Affairs declined to discuss the report.
"The VA has accepted and implemented prior recommendations of the committee and values the work represented in the report," read a statement from VA Secretary James Peake.
The Research Advisory Committee recommended that "highest priority be given to research directed at identifying beneficial treatments for Gulf War illness." To date, no cure has been found, the symptoms persist, and treatment consists of relieving the symptoms.
Regardless of what happens next, soldiers who were derided or rebuffed after suggesting their maladies stemmed from their time in the Persian Gulf now have support for their arguments.
Randy Saubert, who had inexplicable numbness in his fingers when he returned from Iraq, heard from a few doctors that his medical troubles were not connected to the war.
"I always knew something over there caused this, and now they can't deny it anymore," Saubert said.
Saubert isn't sure what he came into contact with in Iraq in 1991 that caused his body to develop amyotrophic lateral sclerosis, or ALS. Known as Lou Gehrig's disease, ALS is a progressive neurological disorder that kills nerve cells and leads to a loss of muscle control.
According to the report released this week, Gulf War veterans suffer a much higher rate of ALS than other veterans. The committee also found that Gulf War soldiers who were downwind of munitions demolitions in 1991 have died from brain cancer at twice the rate of other former Gulf War soldiers.
Saubert drove 38,000 miles back and forth across the Iraq desert in 1991, delivering ammunition, water, gasoline and supplies. A decade after he returned from war, he could not grip anything and he was diagnosed with ALS. Today, Saubert, who turns 52 in December and lives in Colorado Springs, has lost almost all use of his arms and legs. The VA is handling his medical bills.
The VA also is helping Biernacki, who saw her troublesome headaches and stomach pains explode into tremors, seizures and emergency surgeries during her second pregnancy, five years after she returned from the Middle East.
Today, she takes daily medications and has gone a year without any trips to a hospital. "That's a good record for me," says the 38-year-old. "Last year, I went four times."
Like most veterans, she can't pinpoint what caused her maladies. She remembers taking anti-nerve-gas pills. She was told, she said, that if she refused, she would be sent to the military prison at Leavenworth, Kan.
"If I knew then what I know now, I would have gladly gone and sat in Leavenworth," she said.
Anthony Hardie, a Gulf War veteran who serves on the Research Advisory Committee, said he and others in his unit took PB pills for weeks and combined "continual use of DEET and permethrin" with pest strips, spray trucks and other pesticide exposures.
"Like many of the guys in my unit, I became sick," he said, with respiratory ailments and the "typical roundup of fatigue, bowel symptoms, chronic widespread pain."
The committee report is "a profound victory" in one sense, he said: "It's government and science finally saying what Gulf War veterans have been saying all along."
But the report "does not yet bring treatment of the illness, nothing getting at the underlying cause," Hardie said. And 17 years "is an awful long time for someone to wait to get health care."

Monday, November 17, 2008

Talk Show Host Puts His Feet Where His Mouth Is - For ALS

http://www.1070thefan.com/kravitzandeddie/kokomo.aspx

Bob Kravitz is an edgy sports columnist who also hosts a radio sports talk show... and knows how to get the needle out when it comes to professional athletes and franchises.

Nice that he is raising some awareness and funds to fight the disease that took his mother.

Friday, November 14, 2008

How Can We Introduce Bob Costas to Michael Goldsmith?

PALS Michael Goldsmith and Bob Costas both know ALS and baseball. We need to get their talents together to make a really big splash...

http://www.catfishchapter.org/news/chapterpromo.html

Tuesday, November 11, 2008

Do A Veteran A Favor Today, Veterans' Day

Here's something simple and effective.

You're online now, so chances are that you frequent other online sites and blogs. Perhaps they are political. Perhaps they are sports-centered. Perhaps they relate to your car or a hobby. Perhaps they are news sites. Simply take a moment and post this link...

http://www.alsa.org/files/pdf/ALS_Military_Paper.pdf

We know that the death tolls from our wars are far too high, and with the relationship between military service and ALS, our wars have added fatalities long after our veterans come home.

Please do a veteran a favor and post this white paper somewhere for other citizens to see.

Monday, November 10, 2008

Veteran with ALS Ken Patterson on WLS in Chicago

http://abclocal.go.com/wls/story?section=news/health&id=6497778

From the WLS website --
Vets at risk for ALS
Monday, November 10, 2008 11:53 AM

(WLS) -- November 11th is Veterans' Day, a holiday devoted to honoring those who put their lives on the line for their country.
Many veterans return from war with emotional and psychological problems, but there's another risk -- a devastating disease that kills in a couple of years.
As an Army sergeant, Ken Patterson was ready and willing to fight for his country.)
Now, he's fighting for his life. Patterson has ALS, a fatal disease also known as Lou Gehrig's. It attacks nerve cells in the brain and spinal cord.
"You go through anger and then denial. I thought about ending my life," Patterson said.
His speech is affected by the disease. Patterson's lost his ability to walk and move. His wife, Glenda is always by his side.
"Without her, I wouldn't be here," Ken Patterson said.
The Pattersons say they want to know why veterans are more than twice as likely to develop ALS. They recently traveled from their home in Florida to Washington D.C. by wheelchair - 940 miles total.
"Five miles per hour," Ken Patterson said.
The goal of the three-week journey was to raise awareness about the link between ALS and veterans.
Doctor Lucie Bruijn says there could be many causes. Soldiers are often exposed to polluted air, chemical agents, radioactive waste and high-powered vaccines.
"What I think is happening in the case of the military is, there is an environmental exposure and a susceptibility," Bruijn said.
The lifespan of someone diagnosed with ALS is about two to five years. There's just one drug approved to treat the disease, but it only extends life by about eight to 12 weeks and costs about $1,000 a month.
"The huge frustration is no, we don't quite have the answers yet. No, we don't have the therapies," Bruijn said.
Ken Patterson wants answers but knows he doesn't have much time left. He plans on enjoying every minute with his family.
"Live every day," he said.
In September, the Veterans Administration recognized ALS as a service-connected disease. Veterans with the disease will now have access to benefits. It doesn't matter if a veteran served in the Army, Navy, Air Force or Marines; all have a higher risk for developing ALS.
(Copyright ©2008 WLS-TV/DT. All Rights Reserved.)

Sunday, November 9, 2008

Military Veteran PALS on CNN!

http://www.cnn.com/video/#/video/living/2008/11/05/vif.veterans.lou.gehrig.cnn

Michael Goldsmith Rocks The New York Times


http://www.nytimes.com/2008/11/08/sports/baseball/08vecsey.html?em

From the November 8, New York Times --

November 8, 2008

Sports of The Times
Fighting a Disease to Honor a Legend
By GEORGE VECSEY

Sixteen years ago, Michael Goldsmith sat down with his two young children to watch the classic movie “Pride of the Yankees,” about the life, and death, of Lou Gehrig.
“I had the sense of empathy that any decent person would have,” Goldsmith recalled recently. “But I didn’t personalize it.”
About four years ago, Goldsmith found himself walking across the campus at
Brigham Young University, where he is a law professor, repeating the words amyotrophic lateral sclerosis. He did not know why he was saying the words. They just came to his mind. A year or so later, he began having twinges.
Goldsmith was never a Yankees fan. Growing up in Forest Hills, Queens, he adopted the
Baltimore Orioles when they made a run at the Yankees in 1960, and has stayed with the Orioles ever since. He says he always admired Gehrig more than any other Yankee, as a great player as well as a man who lived and died with grace.
Now Michael Goldsmith is fighting the condition, A.L.S., also known as Lou Gehrig’s disease — “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord,” in the words of the A.L.S. Association. It is invariably fatal, usually within four years.
Many people are taking on the cause of fighting the disease, in their own ways. By some strange coincidence, I recently heard about a small group called 2175 for A.L.S., based in the Washington area, which is raising funds by having an endurance athlete, Ben Davis, hike the length of the Appalachian Trail.
The other night I talked to Davis by telephone after he had been in Virginia completing 50 of the trail’s 2,175 miles, spotting a small black bear along the path. He told me he had become committed to fighting A.L.S. after watching Bill Jackson, a chef at the restaurant he manages, die of the disease. Now, he seeks donations for every mile he covers, following the autumn leaves southward from Maine to Georgia. You can follow his progress on
www.2175forALS.com.
Davis, 28, and his support man, Rick Cheever, 25, said they had not seen “Pride of the Yankees” and did not know much about Gehrig. But they know about the disease that killed Gehrig in 1941, and that is what matters.
As a 57-year-old New Yorker and a sports fan, Goldsmith knows about Gehrig. He once heard that there was a private corner under the stands of Yankee Stadium where Gehrig went to cry after learning why his motor skills had vanished so suddenly.
Goldsmith, who has a slower version of the disease, has been able to keep going, three years past the first signs that his body was failing. He continues to teach law classes (“I am known as a racketeering specialist,” he said) and has pursued his connection with Lou Gehrig’s sport, his sport.
After playing baseball in Queens as a child, Goldsmith later picked it up in his 30s in an amateur league, against former college and minor league players, learning to switch-hit and becoming a better player than he had ever been. Early this year, he attended a fantasy camp run by his favorite team. The former Orioles Jeff Tackett and Bill Swaggerty worked with Goldsmith, pushing him onward with basic ballplayer humor: “They never let me get maudlin,” Goldsmith said.
Back in his adopted home in Utah, Goldsmith was hauled off to the batting cage by Gary Pullins, a former baseball coach at Brigham Young, who threw batting practice. The arm muscles were weakened, but Pullins showed him to get more power from his back and butt muscles.
Praising the A.L.S. Therapy Development Institute of Cambridge, Mass., Goldsmith says there is a great need for more research into the disease. For example, he said that when he asked if his normal strenuous workout was good for an A.L.S. patient, some doctors said they did not know. He decided to keep swimming a quarter-mile a day and pushing himself.
Goldsmith now has a proposal: in a guest column in the Nov. 10 issue of Newsweek, he suggested that Major League Baseball help raise funds for research by honoring Gehrig on the 70th anniversary of his retirement, next July 4. So far, he hasn’t heard from M.L.B.
As the nominal national pastime, baseball has gotten great mileage out of its legends, including the enduring film, made in 1942, a year after Gehrig’s death. The screenwriters took Gehrig’s opening line and moved it to the end of the speech, but Gehrig, a former
Columbia University student, actually began his talk this way: “Fans, for the past two weeks, you have been reading about a bad break. Yet today, I consider myself the luckiest man on the face of the earth.”
Having gained from its eloquent hero, baseball would do well to listen to Goldsmith’s suggestion by honoring Gehrig, and all those who fight A.L.S., one way or the other, next July 4.

Saturday, November 8, 2008

Communication from the ALS Association

The following is from an November 7 communication from the ALS Association:

CNN Veterans Day Special Includes Features on ALS
Beginning today, CNN is launching a special series on CNN.com about our nation’s military heroes called “Veterans in Focus: Service, Struggle & Success.” One of the stories focuses on Thomas Cuddy, a veteran with ALS from the DC-MD-VA Chapter. The story discusses what it is like to live with ALS as well as the links between ALS and military service and the new regulations issued by VA to provide benefits to veterans with ALS. We anticipate that companion articles also will be featured on the site throughout the week of Veterans Day. The video is available online at
http://www.cnn.com/SPECIALS/2008/news/veterans.in.focus/. Scroll down on the page and select the link “Vet battles disease.”
Dr. Lucie Bruijn, senior vice president of research and development of The ALS Association, is scheduled to appear on “House Call with Dr. Sanjay Gupta” at 8:30 a.m. ET this Saturday and Sunday, November 8 and November 9. Dr. Bruijn will discuss multiple topics related to ALS, including military veterans with ALS, the International Symposium on ALS/MND in England, and the latest on promising research that could lead to new treatments and a cure and clinical trials. If you miss the show this week, watch a podcast of the show at 3 p.m. ET Monday, November 10 at CNN.com/health. Just look for Dr. Gupta’s photo and click on the podcast link. The story about Thomas Cuddy also will be aired on "House Call with Dr. Sanjay Gupta."
Veterans Resources Available Online
Links to the CNN stories will be available via the new Veterans section of The ALS Association’s website,
http://www.alsa.org/policy/veterans.cfm. The site also includes important resources for veterans with ALS, their families and survivors such as answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Please continue to encourage all veterans you know to join the Roll Call of Veterans. Non-veterans also can become ALS Advocates via the site and receive the tools and information they need to help us fight for veterans and all people with ALS. If you have any questions or would like additional information, please contact the Advocacy Department at advocacy@alsa-national.org or toll free at 1-877-444-ALSA.

Saturday, November 1, 2008

Newsweek! ALS Advocate Michael Goldsmith



This is the best ALS awareness piece we've seen in a loooong time! ...and in a national magazine during election week...

From the November 10 issue of Newsweek - "My Turn" column





Batting for the Cure
Diagnosed with a deadly but uncommon illness, I call upon the game of my youth to take action.
Michael Goldsmith
NEWSWEEK
From the magazine issue dated Nov 10, 2008

I received my death sentence in September 2006 when doctors told me I had amyotrophic lateral sclerosis (ALS), a progressively paralyzing neuromuscular disorder. There is no cure. Commonly known as Lou Gehrig's disease after the Yankee Hall of Famer who died of it, ALS is so uncommon that medical researchers consider it an "orphan" illness—so few people have it that pharmaceutical companies lack financial incentive to invest in finding a cure.

The public also pays scant attention to ALS. (May 2008 was ALS Awareness Month. Who knew?) Public attention and contributions understandably go to more widespread killers like cancer, heart disease and diabetes.

All this means that ALS patients must seize the initiative for funding research. Of course, the vast majority of ALS patients are too sick and incapacitated to take such steps. I am one of the lucky ones. My neuromuscular decline has been steady, but slow enough to let me lead a reasonably normal life. After holding endless pity parties for myself, I decided—not entirely successfully—to transform myself from victim to ALS funding advocate.

Lacking any fundraising experience (I've rarely even asked for a pay raise), I took some time off and returned to my childhood roots: the baseball field. While I still had the strength to hold a bat, I attended a Baltimore Orioles fantasy baseball camp. Some might call it Old Man's Little League, but I reveled in what would likely be my last chance to play the game of my youth. And as a lifetime Orioles fan, this particular camp held special appeal to me.

I expected to have a good time. I did not expect to find the potential solution to my ALS fundraising problem. But I did.

If Little League makes men out of boys, Orioles camp makes boys out of men. The games were highly competitive, but they were also marked by youthful enthusiasm, pure joy and moments of compassion. When my teammates saw me struggling to swing a standard bat, they bought me a lighter one that could still generate power (this helped, but often I just missed the pitch faster).

We hung out with former Orioles, most of who were blue-collar guys thrilled to have made it to the majors. They didn't just give us cursory face time; they coached us intensively and did their best to improve our game. Everyone played, talked and laughed baseball. Orioles manager Dave Trembley told us how he tried to get thrown out of a game without using cuss words; it wasn't easy, and he succeeded only after calling the umpire a "den mother." There was much more. We also shared life stories, and I learned that I was not the only one battling a terminal disease.

At some point, we talked about what Major League Baseball could do to fight ALS, and I realized that next July 4 will mark the 70th anniversary of Lou Gehrig's famous farewell speech at Yankee Stadium. Since his retirement, more than 600,000 Americans have shared Gehrig's fate, as medical science has made virtually no progress toward finding a cure. Through the years some players and a few teams have occasionally helped raise funds, but Major League Baseball has never taken comprehensive action against ALS. Defeating ALS will require the same type of determination, dedication and drive that Gehrig and Cal Ripken demonstrated when they set superhuman records for consecutive games played. With this in mind, why not make July 4, 2009, ALS-Lou Gehrig Day? Dedicate this grim anniversary to funding research for a cure; every major- and minor-league stadium might project the video of Gehrig's farewell, and teams, players and fans could contribute to this cause. An event of this magnitude has the potential to raise millions, dwarfing the relatively scant sums that ALS walks, rides and similar small-scale efforts have produced.

To this day, Lou Gehrig is still named in some polls as the greatest player in baseball history; by all accounts, he also had a reputation for uncommon decency. His legacy for greatness will live forever, but it's time to end the heartbreaking legacy of the disease that bears his name. Major League Baseball can help make that happen.

Of course, this is just a distant dream of a single ALS patient who played baseball every day of every summer growing up. I now look to the game of my youth to help give me and others like me a chance for life.


Goldsmith lives in Heber City, Utah.
URL: http://www.newsweek.com/id/166832