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.

Tuesday, December 30, 2008

WSJ - FDA Is Killing _____ Patients

Following was an opinion piece in this morning's (12/30/2008) Wall Street Journal. It perhaps might elicit some very pertinent thoughts from PALS.

Letters and comments to the Editors of the Wall Street Journal may be directed to


DECEMBER 30, 2008
The FDA Is Killing Crohn's Patients
Science didn't require that I get a placebo.


Right now there are millions of individuals whose lives are
directly dependent on the rate at which new drugs come to market. I'm one of
them. I'm fighting for my life.

To date, half of my intestine has been removed to manage Crohn's disease. Last year, at
age 23, I enrolled in a clinical trial for a treatment that could save my life:
an adult stem-cell therapy that helps damaged intestinal tissue regenerate from
the relentless inflammation and scarring caused by Crohn's.

The sponsor, Osiris Therapeutics, reported that Crohn's patients in the therapy's Phase II
trial all experienced clinical improvement after receiving the cells. A Phase
III trial for the treatment is now nearing completion, but Food and Drug
Administration (FDA) approval could be years away, despite its FDA "fast track"

In accordance with antiquated FDA policies, the Phase III trial is randomized with three groups of patients, and double-blinded, which means neither the doctors nor patients are told what treatment is being administered. One group received full-strength stem cells, another received half-strength, and a third got a placebo (the proverbial "sugar pill"). It appears I got the placebo.

Foregoing all other treatments, I received the four scheduled infusions, and yet my
disease progressed with a vengeance. In a matter of weeks, I became dangerously
malnourished. I've since been readmitted to the hospital countless times, as my
doctors continue to plead with Osiris for information. But Osiris has refused,
citing adherence to FDA protocol.

I am now a lab rat. I have no right to know what happened to me in the study, nor do I
have a right to try the promising treatment as my health deteriorates. It
doesn't have to be this way.

Under the Fifth Amendment's guarantee that "No person shall be deprived of life, liberty or property without due process of law," a critically ill patient should have access to a potentially lifesaving drug that has been deemed safe for human consumption, if the patient agrees to
bear the risks involved. But earlier this year, the Supreme Court refused to
hear a case on the issue, denying countless patients their right to pursue life.

Thankfully, some members of Congress have stepped in to ensure our
rights as patients. In May, Sen. Sam Brownback (R., Kan.) and Rep. Diane Watson
(D., Calif.) introduced the Access, Compassion, Care and Ethics for Seriously
Ill Patients Act. If passed, this bipartisan legislation will begin to restore
the rights of millions of patients by widening access to promising
investigational drugs.

Human clinical research is an intricate scientific and moral process, but it does not justify taking immoral advantage of patients. Tragically, FDA and Osiris think it does.

Typical approval protocols almost always guarantee patients taking
the placebo access to the actual drug -- at the very least -- after the study
has ended. But in what appears to me a deliberate act of cruelty, Osiris hung
its patients out to dry without any recourse, refusing to confirm which patient
got what. The FDA has endorsed Osiris's decision by enabling it to proceed with
the study.

Withholding a potential cure is just as bad -- if not worse -- than the potential death sentence of a serious illness. If patients like myself have the audacity to put their lives on the line for the betterment of science and those in their predicament, their decision should not only be embraced, it should be rewarded.

Furthermore, trials without ethical recourse can lead to inadequate and
incomplete data, compromising the integrity of the study. If trial patients are
treated like lab rats, they won't feel obliged to cooperate unconditionally and
report accurate data -- something the FDA and the drug industry rely on heavily,
but have failed to consider.

Everyone agrees it is a fundamental right for patients to dictate their course of treatment with FDA-approved drugs. So why do the rules evaporate at the most critical moment, when the only life-preserving options are highly promising investigational drugs?

Mr. Sofer is a student at the University of California, Berkeley.

Write to

Thursday, December 25, 2008

We Can Only Hope That President-Elect Obama Read The Morning Paper in Hawaii Today

Artist's strength, living with incurable illness, will be an inspiration foreverSTORY SUMMARY
In a daily countdown, the Star-Bulletin is profiling 10 people who have made a difference in Hawaii during the past year.
These are people who worked in any field - community service, education, politics, law, labor, medicine, science, business, sports, entertainment, the arts - to make a difference. Some fought controversial battles in public.
All that matters is that each, to the one, had a devotion to their cause that made a profound impact on Hawaii.
By Betty Shimabukuro
POSTED: 01:30 a.m. HST, Dec 25, 2008 "A celebration of life" - that is the phrase we use to take the edge of sadness out of a funeral. But when services were held for artist Peggy Chun on Dec. 5, it would have been hard to call it anything but a celebration.
"Mourners" wore butterfly wings, antennae atop their heads; a few dressed as penguins - and although tears were shed, smiles and laughter were in abundance as well.
Chun died on Nov. 19 at age 62 after a six-year battle with amyotrophic lateral sclerosis - ALS, or Lou Gehrig's disease - although "battle" might not be the right word. Even as the disease robbed her of all power of movement and speech, Chun seemed to view each progression as inspiration, not degeneration.
"I'm happier now than I've ever been," she said in 2003, a year into the disease and already traveling by wheelchair. "It's been one hell of an adventure after the diagnosis."
In 2008, although she could communicate only by directing her eyes toward letters arranged around an alphabet frame, Chun supervised the completion of a mosaic of Father Damien, made of thousands of tiny squares of paper that were painted by students at Holy Trinity School.
Although well respected for her art, the indelible mark that Chun leaves is in the example she set, finding purpose and fulfillment while coping with a devastating illness. She rallied hundreds of people around her - a volunteer army called Peg's Legs who shared her care and who were certain that her mind remained active and her spirits high until the end.
"She was a force of nature," said Lynn Cook, who became the family's spokeswoman in the final days of Chun's life. "If she didn't want the gallery to get wet, I swear she could deflect storms."
Chun prepared for each stage of her illness so that she could keep painting. She used her left hand when her right failed, then held her paintbrush in her mouth, then used a computer program that allowed her to paint through eye movements. She treated each adaptation not as a compromise, but as a new skill that added texture to her work. ...

Monday, December 22, 2008

Go, Ravens... Beat ALS

From the Baltimore Sun, December 22--
The team dedicated Saturday night's victory to director of player development O.J. Brigance, who attended his second road game of the season despite his battle with amyotrophic lateral sclerosis. "We dedicated it to O.J. Brigance because of the things that O.J. Brigance talked to our football team about last summer when we started training camp on the very first day," Harbaugh said. "And we told them no matter what your condition, no matter what your circumstance, no matter what hardship you face in life or football, you overcome it. And that's what our football team did."

OK, advocates. How do we leverage the fact that an NFL team is using an ex NFL player with ALS to motivate it through the most exciting part of the football season? How do we get the word out about Brigance and the many other NFL alumni who have or have died from ALS?

The longer the Ravens stay alive in the playoffs, the more opportunities there are for O.J. Brigance to be front and center in their fight... and in his fight for his life.

These Students Rock

We can't do enough to engage young people in the ALS cause. They often have a gift for cutting to the chase and getting publicity and attention. They also are tomorrow's physicians and scientists and political leaders.

Sunday, December 21, 2008

Here's A Beautiful Column on Friendship, Courage, and ALS

...and when you read columns like this, they're perfect for supportive letters to the editor. That can encourage more writing on the subject and certainly keeps ALS in the public eye in one more way.

Thursday, December 18, 2008

ALS Is Murder, She Wrote

The internet rumor mill indicates that Angela Lansbury may be featured in Sunday's PARADE magazine and her involvement with the ALS cause may be mentioned.

Thank You, Lou Gehrig.

After all these years, Lou is still the one who can get this stinking disease with the name that is impossible to pronounce into the public eye.

Too bad there wasn't more media coverage.

Tuesday, December 9, 2008

Petition Being Circulated - National ALS Day, Lou Gehrig Farewell, July 4, 2009

The following petition is being circulated and was passed to . The power of the internet is mighty. For your consideration...

Petition to make July 4th National ALS Day

To: All Major and Minor League Baseball Franchises, US Congress, US House of Representatives On April 30th 1939 The New York Yankees were defeated by The Washington Senators in what would be the last game of Lou Gehrig's legendary baseball career. Two years later Lou Gehrig would lose again, but to a more formidable opponent, Amyotrophic Lateral Sclerosis (ALS). ALS, a progressive and usually fatal degeneration of the nerve cells that cause voluntary muscle movement was first described by French neurologist Jean-Martin Charcot in 1874. It’s been close to 150 years since then and we still don't have an effective treatment or cure for this disease. It is estimated that everyday in the U.S. 15 people are diagnosed with ALS. I know that doesn’t sound like very many people, but consider the fact that this disease has no cure and no treatment. Each year 5,600 people in our country alone are faced with the prospect of gradually making the transition from cane, to walker, to wheelchair. Losing their strength, mobility and independence. Losing their hope that a treatment or cure for this disease will be discovered in their lifetime. There is a gross lack of funding for the research of this disease. Many of you reading this petition are well aware that despite the valiant efforts of several organizations across the country, WE ARE LACKING THE FUNDS TO EFFECTIVELY RESEARCH AND DEVELOP TREATMENTS FOR THIS DISEASE. On July 4th 1939 Lou Gehrig stood on the field at Yankee Stadium in front of a packed house and said goodbye to the game that he loved so much. The spotlight has never shone as brightly on ALS as it did with the passing of Lou Gehrig. This July 4th will mark the 70th anniversary of that historic day in baseball and it would be the perfect opportunity for fans of our great American pastime and for the MLB franchises to stand up together in a statement to ALS that we will NOT be defeated. We WILL find a cure. We WILL honor the memory of Lou Gehrig and everyone who has been touched by this terrible disease. The time is now and we CAN do something to make this happen. Every 4th of July millions of baseball fans gather in stadiums, around televisions and around radios to cheer on their favorite teams. Let's take this opportunity to remind people that every single day this disease is taking lives. Let's rebroadcast Lou Gehrig's farewell speech. Let's give fans an opportunity to remember his legacy and donate to this worthy, but neglected cause. We need to make the 4th of July to ALS what Labor Day is to the MDA. This should be our holiday. This is our chance to raise in 24 hours what we could never hope to raise in a years worth of smaller fund raisers. Let's organize volunteers to collect donations at baseball fields across the country. Let's contribute that money to ALS research and let's knock one out of the park for our friends and family struggling against this disease. LET'S KNOCK OUT ALS! We are petitioning you that July 4th 2009, the 70th anniversary of Lou Gehrig's farewell speech and every July 4th from this day forward be declared National ALS Awareness Day and that opportunities be provided at baseball fields across the country for people to donate to ALS research. Sincerely, The Undersigned Click Here to Sign PetitionPetition Link

Friday, December 5, 2008

PatientsLikeMe Hits The Media

  1. Mentioned on Diane Rehm on NPR this week in a conversation on information in healthcare
  2. Featured in Business Week
  3. To be covered on CBS Evening News tonight (December 5)

Here's hoping that ALS is always mentioned as the compelling reason for the creation of .

ALS Registry Act - Authorization Doesn't Get The Job Done

The ALS Registry Act passed a few months ago was a big, difficult victory, but authorization alone doesn't cut the mustard. Without funding, authorization is a hollow victory. Nobody at the CDC will be counting noses and retaining ALS data until some funding is assigned to the ALS Registry.

The new administration seems to be in listening mode, and now is the time for us to give them an earful about ALS and the need to get the registry funded and implemented.

From this morning's (December 5) Wall Street Journal --

... Mr. Daschle will say the Obama administration wants input
from supporters -- as a way of getting average Americans to feel connected to
the process and invested in its success. At some point, the administration may
seek to mobilize supporters to lobby Congress or otherwise build support for a
plan.... Already, the Obama transition office has posted two health-care
videos on its Web site,,
and it is soliciting comments and ideas from people via the site.

Please use this opportunity to express the importance of implementing the ALS Registry to HHS Secretary-elect Daschle and the Obama administration at and "Submit Your Ideas." Today they are listening. By January, they may be so overwhelmed with problems that it will be much harder to get ALS on their radar.

Monday, December 1, 2008

ALSA 2009 Advocacy Priorities Being Formulated

ALSA chapters are in the process of assembling their top three issues for advocacy for 2009. Chapters' top three issues must be submitted to the ALSA Washington, DC, office by December 12.

Below includes items in the menu of choices which was provided to chapters. Perhaps your local chapter would appreciate hearing your thoughts on your top three priorities.


2008 / 111th Congress Advocacy Listening Tour Issues

National ALS Registry
· Implement the ALS Registry Act, which establishes a national ALS registry at the Centers for Disease Control and Prevention.
· List ALS as the cause of death on death certificates.

· Increase ALS research funding in general – National Institutes of Health, Department of Defense, Veterans Affairs, Centers for Disease Control.
· Stem cell research, including relaxing federal restrictions, expediting human trials.

· Encourage the development of products to treat ALS through FDA drug development process, including FDA Critical Path/Reagan Udall Foundation.
· Ensure that efforts to establish a new approval process for generic biologics do not hinder access to new drugs or drug development.
· The Access Act, legislation that would ban the use of placebos in clinical trials and allow terminally ill patients to purchase investigational drugs once the patients have exhausted existing treatment options and are not eligible for any clinical trials.
· Other issue (please explain)

Veterans Issues
· Ensure implementation of new rules for veterans with ALS that make ALS a service connected disease and establish expedited procedures for veterans to access benefits.
· Assistance accessing/navigating the VA system.
· Develop partnerships for clinical care with the VA, in terms of both research and practice.
· Change functional criteria needed to qualify for adaptive housing grants.
· Other veteran’s issue (please explain)

Long-Term Care Services
· Promote respite care and respite care legislation, including securing appropriations for the Lifespan Respite Care Act.
· Provide Medicare and private coverage of in-home custodial care services and home health aides.
· Change Medicare’s homebound requirements.
· Reimburse family caregivers.
· Establish caregiving tax credits separate from the deduction for medical expenses.
· Provide health benefits to family caregivers.
· Improve access to long-term care insurance at both the state and federal level.
· Encourage home-based care.
· Other long-term care issue (please explain).

Social Security
· Educate local Social Security Administration personnel about the rules for ALS.
· Eliminate the 5-month waiting period for SSDI (disability benefit).
· Eliminate the "20/40" rule under which a person with ALS must have worked five of the previous 10 years in order to qualify for SSDI.
· Other Social Security (please explain)

Medicare Coverage of Durable Medical Equipment (DME)
· Oppose reductions in reimbursement for Durable Medical Equipment.
· Improve coverage for communication/speech generating devices in general.
· Oppose Medicare changes that would eliminate the ‘first month purchase option’ for customized wheelchairs.

· Improve coverage criteria for wheelchairs, including power chairs.
· Improve coverage for bipaps.
· Improve coverage for lift chairs, transfer benches, grab bars, shower chairs, toilet safety frames, toilet seats for bathrooms and kitchens.
· Improve coverage for air-fluidized mattresses and pressure mattresses.
· Improve coverage for DME in general.
· Mandate private coverage for DME needed by PALS.
· Establish caps on out-of-pocket expenses for durable medical equipment.
· Improve coverage for SLP AAC evaluations.
· Other DME issue (please explain)

General Medicare/Medicaid
· Streamline/reduce excessive and burdensome paperwork requirements; address the inefficiencies of Medicare and private insurance.
Estimated percentage of PALS/caregivers/others impacted by the issue in your area: _____
· Educate Medicare and hospice providers that Rilutek is not an aggressive treatment for ALS and should not be a reason for denial of hospice services.
· Speed processing of Medicare claims.

· Other Medicare issue (please explain)
· Other Medicaid (please explain)

Medicare Prescription Drug Benefit
· Improve the current drug coverage to eliminate the coverage gap (‘doughnut hole’).
· Limit the use of utilization management tools such cost sharing, tiering, therapeutic/generic substitutions, quantity limits and other policies of Medicare prescription drug plans.
· Ensure Medicare coverage of specific prescription drugs (Rilutek is currently covered). Please list other drugs that should be covered.
· Ensure Medicare coverage of drugs prescribed off label.
§ Other Medicare Prescription Drug Benefit issue (please explain)

Other Issues
· Charitable giving incentives - allow non-itemizers to deduct charitable gifts.
· Obtain grants to educate nursing homes on how to care for ALS.

· Obtain grants to establish ALS specific nursing facilities.
· Obtain grants to provide transportation assistance and other support to homebound patients.
· Obtain grants to provide social worker consultation services to PALS and families to assist in identifying services.
· Provide counseling for PALS and caregivers to help them cope with the disease.
· Provide legislative protections to prevent abuse and neglect of PALS.
· Ensure adequate supply of flu vaccine and enforcement of CDC guidelines for triage.
· Monitor World Trade Organization activities that impact the availability and dosage of vitamins and supplements that can be acquired without a prescription.
· Support legislation that would adjust the federal financial aid formula for PALS so that the value of their home equity is deducted from the tuition assistance formulas.

§ Other issue (please explain)

Wednesday, November 19, 2008

Another Veteran - Randy Saubert - Featured in Denver Post

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

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...

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...

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

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!

Michael Goldsmith Rocks The New York Times

From the November 8, New York Times --

November 8, 2008

Sports of The Times
Fighting a Disease to Honor a Legend

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
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 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 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 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, 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 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
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.

Friday, October 31, 2008

Iplex - Demonstration on November 11 in Washington

Details are at

ALSA Letter Campaign for Veterans' Day

The ALS Association is promoting a letters-to-the-editors campaign for November 11, Veterans' Day.

Personal notes from --
The capwiz tools are great for locating the media; however, I encourage you to...

> Make your letters unique. Once a newspaper catches on that a letter to the editor is a form letter, it will not be likely to publish and it can permanently hurt the writer's chances for future consideration.

> Make some reference to the publication in your letter. Letters to the editor are normally distinguished from op-eds by making a specific reference to something that has been published in the paper. Even making reference to how supportive the paper or station has been of veterans in the past is better than nothing.

> Write something about half the length of the form letter. Many publications have word count restrictions of 150-200 words or less for letters to the editor. The boilerplate letter in capwiz is 328 words.

> Provide your phone number. The submission form in capwiz does not require a phone number. Major publications require phone numbers and they will call a writer before publication to verify the identity of the writer.

Here are the New York Times guidelines for letters, and they are not unusual. I encourage you to read them before submitting your letters in hopes that you may be successful in being published --

Following is the announcement from the ALS Association:

As Veterans Day approaches on November 11, The ALS Association’s Advocacy Department is launching a letter-to-the-editor campaign to raise awareness of the connection between ALS and military service, build support for our cause on Capitol Hill and continue funding for the ALS Research Program at the Department of Defense. Therefore, we have prepared a sample letter that you can easily send to local media outlets leading up to Veterans Day and continuing throughout the month.To view and send the letter, simply go the Advocacy Action Center of our website,, select Take Action and follow the onscreen instructions. The tool will identify all media outlets serving your area and you can select the local publications (up to five at a time) to which you would like to send the letter. Please customize the letter to include your personal story or that of a local veteran living with ALS in your area. Such personal accounts demonstrate how important this issue is to the local community and increase the likelihood that your letter will be published.In addition to raising awareness of ALS and the connection to the military, the letter-to-the-editor is another way to recruit and mobilize advocates and to engage Members of Congress on these critical issues. It also builds support for our cause and encourages people to take action. We strongly encourage you to take advantage of this important tool leading up to Veterans Day on November 11. Veterans WebsiteThe ALS Association has created a special Veterans section of our website,, that includes important resources for veterans with ALS, their families and survivors. The site has answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Indeed, please 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 or toll free at 1-877-444-ALSA.

60 Minutes

From ... 60 Minutes Sunday evening November 2, featuring assistive technology used in ALS. It's awesome to be on 60 Minutes!

Thursday, October 30, 2008

Does ALS Impair the Memory?


So to people with ALS, caregivers, widows, widowers, orphans, and friends, the following might be of help as you peruse the candidates and the issues before November 4.

Remember when the ALS Registry Act passed the House last year with an overwhelming majority?

"Overwhelming" is certainly not equivalent to "unanimous."

Following link shows the House vote. Please note the three who underwhelmed by voting Nay. Please note the 17 who didn't show up for work that day.

Social Security Cutting the Red Tape

From AP, October 27 --

Social Security speeds disability claims review

People with cancers and other severe medical conditions will get quicker action on disability claims under a new Social Security program.

The time needed to decide claims could trim from 100 days or more to as few as two, said Michael J. Astrue, who heads the Social Security Administration. The Compassionate Allowances initiative will apply to 25 rare diseases and 25 cancers, and may be expanded later, the agency said Monday.

"This is something that I've believed in for a long, long time," Astrue said in an interview before the announcement. His father received disability benefits because of a rare form of brain cancer.

The program focuses on diseases where the conditions are so severe or the treatment so difficult that that the person making the claim obviously cannot continue working. Astrue said the agency can approve many claims solely on confirmation of the diagnosis. Those include acute leukemia, amyotrophic lateral sclerosis (ALS) and pancreatic cancer. Among others on the list are inoperable forms of breast, bladder, kidney and bone cancer; Creutzfeldt-Jakob disease; Gaucher disease; and Rett Syndrome.
At a public hearing on the program last spring, Dr. Edward Benz, president of the Dana-Farber Cancer Institute, said 1.4 million cases of cancer are expected to be diagnosed this year and a significant number of cancer patients are uninsured or underinsured.

"Coupled with an inability to perform work given the disabling impact of their diseases, the financial impacts to these patients and their families are enormous," he said.

Depending on the nature of the claim, a decision from the agency can take months. Getting a hearing for an appeal may take longer, more than a year at times.

This year the agency began a rapid action process whereby computers scan for key terms that make it 95 percent certain a claim will be accepted.

Together with the new program based on specific diseases, the agency estimates the two-track system will result in a decision for 6 percent to 9 percent of disability cases, for as many as 250,000 people, in a matter of days.

Even with the speedier processing, there will be no change in the law under which claimants must wait five months before getting benefits. Those receiving approval may have shorter periods to wait because the five-month period begins from the onset of the disability.

The Social Security Disability Insurance program for the past half-century has paid monthly benefits to disabled workers and certain family members who have worked long enough and paid Social Security taxes.
The Social Security Administration this year will receive about 2.6 million disability claims.

On the Net:
Social Security program:

Thursday, October 9, 2008

How About Daughters Against ALS?

Advice columnist Carolyn Hax in the Washington Post

Advice columnist Carolyn Hax tells what made her mom special
12:00 AM CDT on Thursday, October 9, 2008
Carolyn Hax
Adapted from a recent online discussion.

Dear Readers: As many of you know, I lost my mom, Liz Hax, to ALS (also known as Lou Gehrig's Disease) in 2002. Every fall, I participate in the Walk to Defeat ALS to raise money and awareness to fight this horrific illness.

Dear Carolyn: What, in your opinion, made your mom so special? Many of us reading your column have unhealthy relationships with our parents but want to rise to the occasion for our own children. How did your mom do it? I have a little girl, and I want to do my best by her.

Dear Pittsburgh: That you care so much will go a long way toward making you an excellent parent, but you ask a great question.

Things I really liked about my mom:

She was there.

She listened to us, knew our friends and came to our games.

She hated self-important people, chitchat and phonies.

She was engaged with the world around her and didn't seem out of place in a library, at a concert or at a sporting event. She encouraged varied interests and enjoyed them with us.

She granted us freedom and only helped when asked (though holding back strained her very being).

She didn't withhold her flaws. She held grudges, she got crabby, she burned dinner, she said the wrong things.

She had four babies in five years and wrangled them into adulthood.

She taught the values of hard work and delayed gratification but also allowed moments of indulgence.

I miss her every day.

Write to The Washington Post, Style Plus, 1150 15th St. NW, Washington, DC 20071, or e-mail.

Finding Compelling Visual Images

The Indianapolis Star has an article about a group fighting domestic violence and bringing their cause to life by placing empty pairs of shoes representing victims at a courthouse.

It gives one chills to look at each pair of shoes and to think about a vibrant woman who was killed.

We need to find some ways to send some chills with some images of the thousands and thousands who have been killed by ALS.

Giving Thanks

It's not Thanksgiving yet, but many of us who drove our Senators' staffs nuts trying to get the ALS Registry Act passed should remember to send them some emails of appreciation.

Tools to make it easy are available at

It only takes a few seconds and we really should be grateful. As we look at world events since that day when they passed the ALS Registry Act, I doubt that we would have seen another window of opportunity for a loooong time. Our legislators and their staffs did deliver for us.

Thursday, October 2, 2008

Information from ALS Association Regarding DOD Research Funding

Following is a communication from the ALS Association:

We are excited to let you know that The ALS Association achieved another victory in Washington this week when the President signed into law the FY 2009 Department of Defense Appropriations bill. For the first time, Congress included $5 million in the bill to fund the ALS Research Program (ALSRP) at DOD! We now have a congressionally established program at the DOD that is dedicated solely to ALS research. It is the only ALS specific program at the DOD and is the only program focused on translational research with the goal of finding new treatments for ALS. This is an especially significant victory not only because very few funding bills even passed Congress this year, but also because we overcame a significant amount of competition for scarce federal dollars. The $5 million we secured will be available to ALS researchers across the country. Moreover, the collaboration facilitated by the ALSRP and the additional dollars will provide the ALS community with greater opportunities to develop meaningful treatments. Funding Continues Critical Partnership with DODWhile this is the first time Congress has ever provided funding for the ALSRP, the program was initially developed last year when The Association partnered with DOD to bring new focus to their ALS research portfolio, which we originally helped to start more than five years ago. Dr. Lucie Bruijn, The Association's Sr. Vice President of Research and Development, and Ellyn Phillips, President of the Greater Philadelphia Chapter and Chair of the Association's Board of Trustees Advocacy Committee, served on the ALSRP peer review committee and the program itself was modeled after our TREAT ALS program. Additionally, we successfully worked with the DOD earlier this year to nominate ALS Association Trustee Diane Winokur as a patient/family representative advising the ALSRP on the impact research proposals may have on patients and families.We look forward to continuing our strong partnership with DOD in 2009 to advance ALS research and find a treatment. Thank You!This achievement is the result of the efforts of ALS Association Chapters, PALS, families and military veterans to reach out to Congress and tell the ALS story. It also demonstrates the effectiveness of our strategic outreach, which began when the President released his budget last February and continued through Advocacy Day and the rest of the year.

For the third time in the past two weeks, we have succeeded in accomplishing one of our top priorities. Passage of the ALS Registry Act, implementation of historic new regulations for veterans with ALS, and now funding for ALS research could not have been accomplished without the active involvement of the entire ALS community. THANK YOU!!

Join the Roll Call of Veterans!Veterans with ALS have continued to play an important role in our advocacy efforts. If you are a veteran or know a veteran with ALS, please join the Roll Call of Veterans on our website, here: Learn how you can help us to continue to advance critical issues that will benefit veterans and the entire ALS community.

If you have any questions, please contact us at or 1-877-444-ALSA. Thank You!

Monday, September 29, 2008

Walks to Defeat ALS - They're Much More Than Fundraisers

Walks are an excellent excuse to get ALS into the media. If you live in an area having a walk, please send items to community calendars and church bulletins, put handbills up in every store and coffee shop and school and bank and dry cleaner and doctor you frequent. Offer to do on-air interviews. Send op-eds and letters to print media. Having thousands of members of the public see the letters "A L S," is itself a key component of spreading awareness of this often forgotten disease.

If you are fixated only on the fundraising (which is indeed important), you lose perhaps the bigger benefit of the walks. They are demonstrations against ALS, they are supportive activities for those dealing with ALS or grieving, and they get the public health problem in front of people who don't realize that Lou Gehrig's Disease hasn't been cured yet.

We here all know how urgent the problem is. We need to shout to the rooftops to get the attention of others. News outlets will give a walk some coverage, and we all need to take advantage of that to get the ALS message out.

Browsers Seek Veterans' Information

The website traffic analysis for this site for the last month is very revealing.

The topics related to veterans with ALS were overwhelmingly in the highest demand. Most searches that found the site also had keywords related to the military or veterans and ALS.

We'll do our best to keep the information here as current and accurate as possible, and we'll be on the lookout for information pertinent to veterans. We welcome suggestions. Thanks. The traffic finding this site indicates that it's a worthwhile endeavor.

Saturday, September 27, 2008

Does Anybody Know Anybody At The White House Press Office?

NFL's Wally Hilgenberg Dies from ALS

From the UPI story --

Vikings great Wally Hilgenberg dies

MINNEAPOLIS, Sept. 24 (UPI) -- Former Minnesota Vikings linebacker Wally Hilgenberg has died after a two-year battle with ALS, Lou Gehrig's disease. He was 66 years old.

The former University of Iowa All-American died Tuesday morning at his Lakeville, Minn., home surrounded by family members.

Hilgenberg was a fourth-round pick by the Detroit Lions in the 1964 NFL draft, but his best
playing days were from 1968-79 with the Vikings' "Purple People Eaters" defensive line.

He played in all four Vikings Super Bowl appearances and before he retired in 1979, and also played for Pittsburgh Steelers.

"As good as a football player as he was, he was even a better guy," said one-time teammate and longtime friend Stu Voigt. "I can honestly say that I was better as a football player and am better as a man for knowing (him)." "He was a great guy in every respect," said former Vikings coach Jerry Burns. "Everything about him was first class."

The list of NFL players stricken with ALS is startling (see September 8 blog entry). Perhaps the NFL Players Association would help raise the question as to whether there is a football connection to ALS.

Media Release from ALS Association Regarding ALS Registry Act

Following is from the ALS Association:

Congress Votes to Create National Registry for Lou Gehrig’s Disease;
President Expected to Sign ALS Association Priority Into Law

CALABASAS HILLS, Calif. (September 26, 2008) – Congress took a major step in the fight against Lou Gehrig’s Disease today when the House of Representatives passed the ALS Registry Act (S. 1382). The legislation, which passed the U.S. Senate on September 23, now heads to President Bush, who is expected to sign the bill into law.

The ALS Registry Act would establish the first ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention. The registry would collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941.

“The ALS Association and people with ALS across the country have been working with Congress for nearly four years to pass this critical legislation,” said Gary Leo, president and CEO of The ALS Association. “It’s long overdue. Today, the U.S. Congress has made it clear that our nation is committed to finding a treatment and cure for this horrific disease.”

It has been nearly six decades since Lou Gehrig lost his life to ALS. Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years.

The ALS Registry Act enjoyed broad bipartisan support thanks to the grassroots efforts of thousands of people with ALS and their families who reached out to Congress as well as the efforts of Congressional leaders to shepherd the bill through the legislative process.

“Today’s victory could not have been accomplished without the active involvement of people with ALS and their families,” said Steve Gibson, The Association’s vice president of Government Relations and Public Affairs. “And it could not have passed without the bipartisan leadership from Senate Majority Leader Harry Reid (R-NV), Senator John Warner (R-VA), Senator Lisa Murkowski (R-AK), Representative Eliot Engel (D-NY), and Representative Lee Terry (R-NE). The ALS community deeply appreciates their commitment to our cause and their tireless efforts which have directly led to today’s victory. ”

Gibson also noted that the bill will benefit our nation’s military veterans. “Although ALS can strike anyone, regardless of their age, gender, race or nationality, recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population. A national registry will enable us to learn why our veterans are at greater risk of ALS so that we can take action to help them and to protect the lives of our heroes serving in the military today. We urge President Bush to sign this critical legislation into law.”

The ALS Registry Act was introduced in the Senate by Reid and Warner and in the House of Representatives by Engel and Terry. As Congress sent the legislation to President Bush, members of Congress from both sides of the aisle acknowledged the more than three-year fight that led to today’s action and noted the important role a national ALS registry will play in the continuing fight for a treatment and cure.

“After years of obstruction, both chambers of Congress approved our legislation that will give hope to those affected by ALS,” Reid said. “This bill will arm scientists with the tools they need to make progress in the search for a cure for ALS, or possibly a way to prevent this devastating disease in the first place. I am so pleased that we were finally able to pass this legislation on behalf of all of the individuals and families who have shown exceptional courage and grace in the face of this difficult illness.”

“The great Lou Gehrig put a national face on ALS over 65 years ago, and my own family was devastated by the death of my grandmother, Dora Engel, who is believed to have passed away as a result of ALS in her 50s,” Engel said. “The establishment of a registry will bring new hope to thousands of patients and their families that ALS will no longer be a death sentence.”

The ALS Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front − research, patient and community services, public education, and advocacy − to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

Additional quotes from members of Congress:

House of Representatives
“All diseases bring hardships on those afflicted, but ALS is particularly cruel in the quickness of the onset, the severity of the symptoms and the fatal nature of the condition.” – Rep. Lee Terry (R-NE)

“After years of hard work, I am pleased Congress has passed the ALS Registry Act. This legislation provides for the creation and maintenance of a single nationwide ALS registry. With an estimated 30,000 Americans affected by this disease at any given time and some 15 new cases of ALS diagnosed every day, this much-needed legislation will help provide hope for those affected and their families.”
– Sen. John Warner (R-VA)

“It has been nearly 70 years since Lou Gehrig’s diagnosis and almost 150 years since ALS was first detected and yet we still have no effective treatments or a cure. This is a true victory for the nearly
6,000 Americans diagnosed with ALS every year and for those we have lost to this vicious disease. While the National Institutes of Health (NIH) must continue to research ALS, in the interim, we can facilitate these efforts by providing for a national registry to help find a treatment and cure for ALS.”
– Sen. Lisa Murkowski (R-AK)


Tuesday, September 23, 2008

Information For Veterans with ALS from the ALS Association

Following is from the ALS Association:

As you know from the great news we shared last night, the VA has officially published regulations establishing ALS as a service connected disease. As of today, September 23, all veterans with ALS automatically will be eligible for benefits - no matter when or where they served and no matter how soon after discharge they were diagnosed.

The ALS Association worked closely with the VA in announcing the new policy and we will continue to partner with the Department to identify veterans with ALS and ensure they receive the benefits they need and have earned. Additional information on the benefits available as well as how to obtain benefits can be found below. To read today's press release from the Veterans Administration click here. Click here to read The ALS Association's press release.

Thank You
We again would like to thank all veterans for their efforts to advocate for this vital benefit. In particular, we would like to recognize three veterans with ALS whose outreach to Congress and the VA played critical roles in this victory: Jeff Faull, from our Greater Philadelphia Chapter, Tom Mikolajcik (USAF) Ret. who helped found our South Carolina Chapter and Jim Thew, from the Greater Chicago Chapter. Jeff, Tom and Jim deserve our thanks for their tireless efforts to make this benefit a reality. Click
here to read more about these great advocates.

Additional Information Available
Now that we have won this battle, it's time to make sure veterans with ALS receive the benefits they need as soon as possible. Therefore, we are providing the following links that include additional information on the new policy as well as guidance on how veterans can access benefits. The Association will be posting this and other information to our website in the coming days, including answers to frequently asked questions. However, if you have other questions about accessing benefits or about the new policy, please contact The Association's toll-free hotline at 1-800-782-4747 or
Select the following links for additional information:
Accessing Benefits
Service Connected Benefits
Summary of New Regulation
Text of New Regulation
Veterans Service Organizations: Local Contact Information

Coming soon: Frequently Asked Questions
Join the Roll Call of Veterans Our success on this and other issues important to veterans with ALS is the direct result of the active involvement of veterans in our advocacy efforts. Through our Roll Call of Veterans, we have helped empower veterans with the information and tools they need to improve benefits and advance research in the fight for a treatment and cure. It's clear that we have made a difference.
However, we still have more work to do. We need to learn why veterans are at greater risk of ALS, develop new treatments for the disease and even prevent this disease from striking in the first place. By joining the Roll Call of Veterans, you too can make a difference. If you are a veteran, please join the Roll Call of Veterans! Visit our website at:

Statement from the ALS Association

Following is a statement from the ALS Association regarding the ALS Registry Act:

Senate Passes ALS Registry Act

The United States Senate passed the ALS Registry Act on September 23, marking a huge victory for people with ALS and their families across the country. The outreach from the ALS Community in this effort has made a difference!

The bill now heads to the House of Representatives, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. The ALS Association will keep the ALS Community updated as the bill moves toward enactment into law.The ALS Association extends congratulations to everyone who has worked so hard to make this day possible!

Today We Are Grateful and Incredibly Happy

The ALS Registry Act was passed by unanimous consent in the Senate today after a compromise was brokered with Senator Coburn.

Thank you, Senator Reid.

Thank you, Senator Murkowski.

Thank you to every person who emailed a legislator or stalked a Senator in an airport or made a trip to Washington or to a local office to be heard.

Thank you to every person who raised Cain and made noise.

Thank you to everyone who wrote an op-ed or a letter to an editor.

Thanks to all who worked so hard that people with ALS will now be counted.

Now, let's use the clues and finally figure out this $%^&^(*(# disease!

Monday, September 22, 2008

Communication from ALS Association re Veterans with ALS

Following is a communication from the ALS Association:

It's Official!!!
VA to Grant Benefits to All Veterans with ALS

We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found
here. The text of the regulation is available here.
Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at

Veterans Affairs - Documenation for ALS Presumptive Service Connection

Senate vs. Soaps on Tuesday

The saga of S.3297 and what legislation will be freed of the Coburn hold continues until Tuesday morning.

Fire Up CSpan2!

Breaking news... Senator Reid started things moving on some bills in the Coburn Omnibus package this afternoon.

Oprah's child predator and two other bills were pulled out of the omnibus and passed by unanimous consent.

More may happen this evening with the ALS Registry Act and some other bills left in the package. Senator Reid is awaiting the arrival of Coburn back in Washington (around 7 pm EDT).

If you don't have cable television, you can access CSpan2 live online. This could be a lot more interesting than Monday Night Football!

Friday, September 19, 2008

The American Legion Is On The Case

The American Legion has set up web tools to support the ALS Registry Act via S.3297!

Here is the link to their website...

Please forward this information to any U.S. military veterans you know, and ask them to forward it to church groups, community organizations, clubs, friends, family...

Thanks, American Legion. Your engagement will help many people feel motivated to be involved.

Deju Vu - Let's Have A Different Ending This Time

Over 800 Americans with ALS have died since that July 28 Senate vote not to proceed with voting on S. 3297, the package of bills that contains the ALS Registry Act (and other bipartisan legislation that is important to ordinary Americans).

There are also over 800 newly diagnosed people with ALS facing a big, nasty ALS trip with their families.

If the same vote comes up next week (and we hope it does), we need 60 Senators to vote to move ahead with S. 3297. We need 60. We hear that the Democrats rule the Senate, but there are only 49 of them. There are 49 Republicans. There are 2 independents. We need some of each. We need for the Democrats who were with us on July 28 to stay with us. We need the Republicans who were with us on July 28 to stay with us and to bring some of their friends along.

Please email your Senators even if you have every confidence that they will be with us again. We need for them to show up to vote for S. 3297 and to convince their peers to do likewise.

Communication from ALS Association

Following is a communication from the ALS Association:

Urgent Registry Update

Thanks to everyone for contacting their Senators in support of S. 3297 and the ALS Registry Act. Our supporters in the Senate who have asked us to activate the ALS community are reporting that your outreach is being heard on Capitol Hill! We want to give you the latest update on what is a very fluid situation. At this time, the Senate will not be voting on S. 3297 today. However, it's possible that a vote onS. 3297 and the ALS Registry Act could occur at any time over the coming days, including early next week. Senators are in the process of determining how they will proceed on a wide range of issues, such as the financial crisis, before Congress adjourns for the November elections, which could be as soon as next Friday, September 26. Therefore, the schedule is in flux and can change in just a matter of hours. Nevertheless, it's important that our message already is being heard on the Hill.

Given the rapidly changing schedule, we want to make sure that we do not miss any opportunity to pass S. 3297 and the ALS Registry Act this year. So your outreach today and over the next week is still critical. Keep up the great work! Letters you can send to your Senators will continue to be available on the
Advocacy Action Center of our website here,

We will keep you updated on the latest news. Since the Senate may act at any time next week, it may not be possible to provide significant advance notice. So again please keep an eye out for our Action Alerts.Your outreach is making a difference!

Thursday, September 18, 2008

Urgent Action Item from ALS Association

Following is a communication from the ALS Association:

ALS Registry Vote Possible Friday!

As early as Friday, September 19, the Senate may hold a critical vote on S. 3297, the Advancing America's Priorities Act, which includes the ALS Registry Act. This may be the first of potentially several votes on S. 3297. However, Friday's vote likely will determine whether the Senate passes the ALS Registry Act this year!

Therefore, please contact your Senators immediately and tell your friends, family, colleagues - and everyone you know - to do so as well. Urge your Senators to vote YES on S. 3297. Even if you already have contacted your Senators this week, your outreach is still needed. We want to fill Senator's inboxes and make it clear that they must pass the ALS Registry Act this year. People with ALS don't have time to wait.

Letters you can personalize and send to your Senators are available in the
Advocacy Action Center of our website, here: If you don't know the names of your Senators, don't worry. The Advocacy Action Center automatically will identify them for you and enable you to contact them directly from the site.

ALS Association, Key Senators Meet with Senator Coburn

Over the past few days Senator Harry Reid (D-NV) and our supporters in Congress once again have reached out to Senator Tom Coburn (R-OK) in a last ditch effort to convince him to release his hold on the ALS Registry Act and S. 3297. In fact, just a few hours ago, The ALS Association joined Senator Lisa Murkowski (R-AK) for a face to face meeting with Senator Coburn. Senator Murkowski shared the story of her cousin whose husband is living with ALS and once again urged Senator Coburn to join us in providing hope and help to thousands of Americans fighting this horrific disease. Unfortunately, Senator Coburn continues oppose this bill. And that's why it's so important that you contact your Senators TODAY!

Don't Be Fooled

As the Senate prepares to vote on S. 3297, we anticipate that some may try to muddy the waters by raising issues such as energy, the cost of the legislation, and the financial crisis - some of the same issues that were raised when the Senate voted on S. 3297 in July. Tell your Senators not to be fooled by these tactics. They are just excuses for voting against people with ALS. Tell your Senators that their vote will demonstrate whether they support their constituents with ALS or whether they support Senator Coburn. And make sure you let them know that you'll be watching how they vote!

So again, please contact your Senators NOW! Together, we can pass the ALS Registry Act this year!
If you have any questions or would like information or assistance, please contact the Advocacy Department at Thank you!

One Last Chance To Save Our Investments

No, this won't help with the tanking stock market, but it can help with the time and money and effort that many have invested in getting an ALS Registry at the CDC.

If we do nothing, then the Senate won't see a need to mess with S.3297 and all of those trips to Washington and appointments in district offices and emails are down the drain. We lose everything and have to start from scratch in 2009.

A few of us remember the first talk of an ALS registry at the advocacy conferences back in the early part of the decade. There was finally ALS Registry Act legislation introduced in 2005, and for two years we worked on that and it went poof when it wasn't passed in two years. We started over with the ALS Registry Act of 2007, and today that legislation has overwhelmingly passed the House and would have been passed easily by the Senate a year ago had it not been for one Senator who single-handedly stopped it.

How many dollars have been invested in trips to Washington and communications and time off work to get the legislation this far?

An even more important investment is the time and energy of people with ALS who have exerted great efforts to be heard. Many of them who worked on the ALS Registry Act of 2005 are no longer with us. Many more have given a big slice of the time they have left to improve the lot of others by working to get the current ALS Registry legislation passed.

The investment has both a dollar price and a priceless cost of vitality of people with ALS. When they overdo it getting to legislators' offices, they don't bounce back. They literally have invested precious pieces of their lives.

We all need to make one more simple investment today and email our Senators. If we don't, we lose our complete stake in the ALS Registry Act and the Fed won't be there to bail us out.