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.

Monday, August 24, 2009

We Need Paul Harvey tell us the rest of this story!

This story was picked up in a lot of tweets this afternoon --

1,200 veterans wrongly told they have ALS
By The Associated Press

CHARLESTON, W.Va. -- At least 1,200 Gulf War veterans across the country have been mistakenly notified by the Veterans Administration that they suffer from a fatal neurological disease.

National Gulf War Resources Center Vice President Denise Nichols says panicked veterans from Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming have contacted her group.

The letters dated Aug. 12 were intended to notify veterans who have amyotrophic lateral sclerosis, or Lou Gehrig's disease, of disability compensation benefits available to them.

Calls to the VA were not immediately returned Monday.

Nichols said the VA is blaming a coding error for the mistake.

ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles.

Perhaps this horrible mistake will get raise the awareness of how difficult it is to have faith that ALS is identified correctly in medical and death records as G12.2. It should.

VA folks might want to hang out at

Let's hope this story hits a lot of news outlets and turns into an tsunami of awareness as big as the tsunami of terror that hit those veterans and their families.

Thursday, August 13, 2009

Might We Actually Be Seeing Some Common-Sense Healthcare Reform That Works for ALS?

Gov. Quinn signs spousal caregivers bill into law

GateHouse News Service
Posted Aug 13, 2009 @ 09:00 PM
Last update Aug 13, 2009 @ 09:02 PM


A new state law inspired by two Peoria-area families will set up a pilot program allowing a limited number of people to get paid for providing full-time care to their disabled spouses.

Gov. Pat Quinn's decision to sign the proposal Thursday came as welcome news to Kathi Kupferschmid, an East Peoria resident who is constant caregiver to her husband, Dennis. He has amyotrophic lateral sclerosis, or Lou Gehrig's disease, and it has robbed him of the ability to move anything except his eyelids.

"I might be doing some cartwheels later, if I can find the energy," she said in a phone interview Thursday evening. "I think it's wonderful. It was a long haul."

The Kupferschmids and another couple, Stefanie and Bryan Eklund of Knoxville, face similar situations that came to the attention of Sen. David Koehler, D-Peoria, and Rep. Donald Moffitt, R-Gilson, years ago.

The wives care full-time for their seriously disabled husbands, but neither woman is eligible for the Medicaid payments that would be given to an outside caregiver.

Koehler and Moffitt thought that was unfair, so they sought to change state law. Their effort last year fell short, but the 2009 version of their "spousal caregiver" proposal reached the governor's desk.

With Quinn's signature, House Bill 39 became law immediately.

The pilot project, to be overseen by the Illinois Department of Public Health's home services program, will allow spousal caregiver payments to a maximum of 100 families. Depending on the results, the pilot project eventually could get expanded.

"It's important because there are people that are in situations where they have no other means of supporting themselves and their families," because they're always attending to the needs of a seriously disabled spouse, Koehler said.

Let's hope this pilot is a success and that a former Illinois resident who is now living in Washington is watching a simple concept that delivers better patient care.

Wednesday, August 12, 2009

This Is Advocacy

...simply at its best.

Strong, clear, respectful, effective... please listen to Eunice Kennedy Shriver's message at

Tuesday, August 11, 2009

And Now You Know The Rest Of The Vinci Glove Story

When Atlanta Brave Vladimir Núñez stepped to the plate last summer, it was the closest Pete Vinci had ever been to the majors.

His father, Benjamin, owned a vacuum cleaner shop and tried to get his son to learn the family business, but Pete was more concerned with playing pro ball.

Vinci started playing Little League at the age of 5 when he was growing up in Westchester County, NY. But Vinci’s contribution to America’s pastime wasn’t destined to be as a player.

He turned down an invitation to train with the Kansas City Royals because his father was diagnosed with Lou Gehrig’s disease. Vinci spent the next years caring for his father.

While he was out of the game, his preoccupation with the sport didn’t die down. Vinci spent his extra hours designing baseball gloves...

This is Advocacy

Sunday, August 9, 2009

Rick Smith, Dear Abby, Rev. Fred Campbell -- The Ultimate ALS Advocates

Perhaps there's a lesson here that we all must do better to educate America about ALS in the military and the benefits veterans and their families have earned.

RICK SMITH: Dear Abby: Thanks for helping veterans
By Rick Smith Saturday, August 8, 2009

Be careful what you wish for.
When the Rev. Fred Campbell started looking for a way to get the word out about new monthly benefits for the widows of veterans who died of Lou Gehrig’s disease ALS — Amyotrophic Lateral Sclerosis), he went to an old friend. “Dear Abby” had helped the 87-year-old San Angelo resident once before, in 2001, when she printed his letter alerting former prisoners of war and their widows to special veterans’ benefits.

On July 18 of this year, she printed his information about the ALS benefits.
“I’m pleased to help you and America’s veterans once again,” she wrote in her column, listing Fred’s mailing address and e-mail. Fred had also offered to have his phone number published, but Abby’s office told him that wouldn’t be a good idea.He found out why a few days letter when the mail started coming.

“Boy, I tell you,” Fred told me, his voice trailing off. His letter appeared in Abby’s column on a Saturday.“By the following Wednesday I already had 1,000 e-mails,” he said.Since then, he’s received another 1,500 e-mails and 400 letters. (When I called Fred on Thursday, he was answering 15 letters delivered that day.)

While he has help answering his e-mail, he takes pride in personally helping as many individuals as he can. “So many people don’t know anything about this benefit,” he said. After his letter was published July 18, Fred realized he had left out a toll-free number so people could call the Department
of Veterans Affairs for help.

He wrote Abby again asking if the number could be published. She called him. “I asked, ‘Are you really Abby?’” Fred told me, laughing. She was. Jeanne Phillips’ mother, Pauline Phillips, created the column in the 1950s. Abigail Van Buren was the pen name her mother picked. The daughter, in turn, continued using “Abby” when she began writing the column in 1987.

She told Fred she will include the 800 number in her Aug. 20 column. Fred figures Abby’s column has helped get the word about the spouses’ benefits to about 5,000 people in all. One woman he talked to was about to lose her home. The additional income will hopefully help her keep it. “Stories like hers keep me going,” Fred told me. He thinks they might help keep “Dear Abby” going, too. “I’m going to write another letter to Abby and tell her about how she helped that woman. About all the people she’s helped.”

For more information, write Fred at 3312 Chatterton Drive, San
Angelo, TX 76904, or call the VA’s regional office, 800-827-1000.

Thursday, August 6, 2009

ALS Association Calls U.S. Citizens To Action

Following is from the ALS Association, Washington, DC, office:

ALS Registry Action Alert and Update

As Members of Congress head home for the month-long August recess, we need your help to increase funding for the national ALS registry.

The ALS Association secured a major victory last week as the Senate Appropriations Committee passed legislation that would provide $7,000,000 for the ALS registry! This represents a 40% increase in funding over last year and is a tremendous accomplishment considering the current economic climate and the fact that most other health programs were cut, eliminated or did not receive any increase in funding.

However, several more steps remain in the legislative process before this funding becomes law. Therefore, we need your help over the August recess to deliver a loud and clear message to your Senators: help find a treatment and cure for Lou Gehrig's Disease by voting for the FY 2010 Labor/Health and Human Services Appropriations Act, which would provide $7 million for the national ALS registry.

Please contact your Senators TODAY. Go to the Advocacy Action Center of our website,, to send a letter to your Senators and help make a difference in the fight for a treatment and cure.

Support Health CURE Reform

It's absolutely critical that you contact your Senators this August. Over the recess, much of what they hear will focus on "health care reform" and expanding coverage to the uninsured. While these are important topics in which The ALS Association is engaged, we must make sure Congress does not forget about the un-cured: people living with ALS who have no effective treatment available. We need Congress to direct attention to health CURE reform, not simply health care reform. After all, people with ALS need a treatment and cure as soon as possible and the ALS registry is a vital tool that can help us reach this goal. So please Contact your Senators TODAY!!

CDC Makes Progress in Building the ALS Registry

The ALS Association continues to partner with the Centers for Disease Control and Prevention as the Agency builds the national ALS registry. We are pleased to report that significant progress has been achieved as the registry pilot projects that were underway over the past several years are now complete. The Agency now is moving forward with the exciting next steps that include the pending launch of an online web portal, which will allow every person with ALS in the United States to easily enroll in the national ALS registry. A more detailed update on the ALS registry can be found

Enrolling in the Registry

Although enrollment in the ALS registry has not yet begun, The ALS Association is working with the CDC to ensure that as many people with ALS as possible enroll in the registry once it is formally launched. Therefore, we urge all PALS to sign-up as ALS Advocates via our website here: By selecting ALS registry when signing-up, PALS will be notified as soon as the registry becomes operational and they also will receive detailed instructions on how they can enroll.

In the meantime, please make sure to contact your Senators. The future of the ALS registry depends on Congressional funding. And that funding is only possible if you contact your Senators and let them know that people with ALS don't have time to wait!