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, September 30, 2009

The Separation of Science From The Art Of Medicine, The Methuselah Dance, and Bailing Out ALS


The link below will take you to a video from the recent World Stem Cell Congress. It's a panel session centered around ALS. If you have 90 minutes, it's worth watching.

http://gpi.fullviewmedia.com/world-stem-cell-summit/html/10_Parkinsons-ALS-Neurological-Disorders2.html

If you don't have 90 minutes, slide forward to around one hour into the presentation and listen to Dr. Siddique from Northwestern University for about 15 minutes. He's the gentleman in the blue shirt and blue tie. His clear explanations speak volumes about the reality of ALS, the reality of the science, and the art of medicine.

If more of us listened to Dr. Siddique, perhaps we would raise our national resolve to close the gap of knowledge and understanding and to cure this %!@#$$% disease.

Friday, September 18, 2009

People In Greensburg, IN, Get ALS Awareness



Minear's Department Store rocks!

Please Pass This Information Along To Anyone You Know Who Has Lost A Loved One To ALS !!!

Time is short. If widows and widowers miss next week's deadline, they could well miss over $10,000 in retroactive benefits. If a spouse died from ALS many years ago and happened to be a veteran, the widow or widower may well qualify for the benefit today. This has not been well publicized except for Dear Abby, so we're repeating the Dear Abby information here in hopes of finding some people whose spouses earned a significant benefit for them.

If you think you may qualify, please contact the Paralyzed Veterans of America 1-800-555-9140 quickly. They will help you file.

http://www.philly.com/philly/entertainment/20090718_Dear_Abby__Her_boyfriend_fears_her_fidelity_while_studying_abroad_may_be_a_mistake.html
DEAR ABBY: In May 2001, you printed my letter alerting former prisoners of war and their widows to the special veterans' benefits available to them from the
Department of Veterans Affairs. The response was great; many former POWs and
their dependents now have their VA benefits because of that column. Now, as chairman of VA outreach for American Ex- Prisoners of War, I write to alert all veterans (not just former POWs) of a recent VA ruling.

On Sept. 23, 2008, Lou Gehrig's disease, amyotrophic lateral sclerosis, was made a presumptive condition for all veterans who served in our armed forces for at least 90 days. This means that the widows of those vets who died of Lou Gehrig's disease in the past are eligible for the VA widows' monthly benefit, which is very substantial. Many people are not aware that a veteran's death due to this disease is now considered service-connected. One claim I handled recently involved an ALS death 46 years ago, in 1963.

Thank you for your help in getting the word out, Abby.
- Fred Campbell,
American Ex-Prisoners of War
DEAR FRED: I'm pleased to help you and America's veterans once again.
Readers, Fred welcomes inquiries at 3312 Chatterton Drive, San Angelo, TX 76904.
He can also be e-mailed at
fredrev@webtv.net.



People who lost loved ones years ago and who have not been in recent touch with ALS organizations or online ALS information need to be alerted. Please help.

Tuesday, September 15, 2009

ALS Is Front-And-Center In The New York Times Again!

This time there is an excellent article on covered technology, ALS, and common sense (and how they don't converge). People with ALS have much to contribute to the discussion of healthcare reform and healthcare delivery.

September 15, 2009

For Speech-Impaired, Insurance Fights Remedy

SAN FRANCISCO — Kara Lynn has amyotrophic lateral sclerosis, or A.L.S., which has attacked the muscles around her mouth and throat, removing her ability to speak. A couple of years ago, she spent more than $8,000 to buy a computer, approved by Medicare, that turns typed words into speech that her family, friends and doctors can hear.

Under government insurance requirements, the maker of the PC, which ran ordinary Microsoft Windows software, had to block any nonspeech functions, like sending e-mail or browsing the Web.

Dismayed by the PC’s limitations and clunky design, Ms. Lynn turned to a $300 iPhone 3G from Apple running $150 text-to-speech software. Ms. Lynn, who is 48 and lives in Poughkeepsie, N.Y., said it worked better and let her “wear her voice” around her neck while snuggling with her 5-year-old son, Aiden, who has Down syndrome.

Medicare and private health insurers decline to cover cheap devices like iPhones and netbook PCs that can help the speech-impaired, despite their usefulness and lower cost.

Instead, public and private insurers insist that, if Ms. Lynn and others like her want insurance to pay, they must spend 10 to 20 times as much for dedicated, proprietary devices that can do far less.

The logic: Insurance is supposed to cover medical devices, and smartphones or PCs can be used for nonmedical purposes, like playing video games or Web browsing.

“We would not cover the iPhones and netbooks with speech-generating software capabilities because they are useful in the absence of an illness or injury,” said Peter Ashkenaz, a spokesman for the federal Centers for Medicare and Medicaid Services. Private insurers tend to follow the government’s lead in matters of coverage. Two years ago, iPhones and netbooks barely existed, so it may not be surprising that the industry has yet to consider their role as medical devices.

But the health care system has long had trouble keeping up with Moore’s Law, the principle that computing power rapidly increases even as costs fall sharply.

Doctors must still bring a patient into their offices instead of, say, inspecting an e-mailed photo of a rash if they want most insurers to pay for the consultation. Digitizing medical records is such a vast undertaking that the government is now spending billions of dollars to jump-start it.

In the case of A.L.S., also called Lou Gehrig’s disease, advocates spent years fighting to have any speech-specific devices covered by insurance, finally succeeding in 2001.

For the millions of Americans with A.L.S., Down syndrome, autism, strokes and other speech-impairing conditions, the insurance industry’s aversion to covering mainstream devices adds to the challenges they face. Advocates say using an everyday device to communicate can ease the stigma and fear of making the adjustment.

At the same time, current policies mean that the government and private insurers may be spending unnecessary dollars on specialty machines.

Dr. Stanley E. Harris, who helps set device coverage policies for Horizon Blue Cross Blue Shield of New Jersey, said that if enough patients requested new types of devices, the insurer would study their usefulness. “We’re looking for evidence-based data to support the effectiveness of whatever is being requested,” he said.

In the meantime, people with speech disabilities have a choice: pay for a cheaper product from their own pockets, try to borrow one from a private assistance group or spend their insurer’s money on a specialty device from a company like DynaVox Mayer-Johnson or Prentke Romich.

DynaVox, a leading maker of devices for the speech-impaired, has computers that start at $8,000 and run Windows, just like 90 percent of all PCs. To meet insurance rules, DynaVox disables the general computing tools. After the insurer pays, customers can pay $50 to DynaVox to reactivate the full functions.

The proprietary devices have some special qualities. They are sturdier than typical computers and have better speakers and links to support services.

But the prices may seem hard to justify based on components alone. One $5,000 DynaVox product is essentially the speech software bundled with a two-pound keyboard that has a six-inch screen. And the manufacturers mark up standard accessories by as much as 2,000 percent. Prentke Romich, for example, charges $250 for a Bluetooth wireless adapter similar to those that cost $20 in stores.

Jim Shea, vice president for marketing at DynaVox, says his company’s prices run high because it must do a lot of custom work and research to serve a niche that mainstream companies ignore. “We are not riding the wave of consumer electronics in terms of cost,” he said. “We’re building the devices here in Pittsburgh from scratch.”

In addition, the do-it-yourself approach isn’t for everybody, he said. “You have to be somewhat savvy, get the software and set it up,” he said.

Disease experts say companies like DynaVox and Prentke Romich make many sophisticated, helpful products. Still, advocates argue, advances in computing and easy-to use speech software have opened doors to use cheap mainstream alternatives. Indeed, the price drops have made it possible for A.L.S. assistance groups to buy dozens of netbooks, install specialized software like Proloquo2Go and lend them to clients.

Betsy Caporale, a speech language pathologist in Danville, Calif., has tested various devices and software with children who have Down syndrome and autism.

“The iPhone has been a runaway success with these kids,” she said. “It takes them about 10 minutes to learn how to use the iPhone, and there is this cool factor for them.”

Ms. Lynn, from Poughkeepsie, would like to see insurers loosen their rules to accommodate general-purpose devices and give people like her more financial flexibility. Since insurers will typically cover only one device every five years, people with degenerative conditions like A.L.S. often hold off any claims until their condition worsens, and they really need an expensive specialty product that can track their eye and head movements.

Perhaps the government could set a certain dollar limit and then let patients find the products that fit their needs, Ms. Lynn suggested. “I really would like to see Medicare do away with the dedicated-device rule and the one-device limit,” she said by e-mail.

But so far, government and private insurers are not swayed. “We look at determining the effectiveness of the technology — and not the cost — first,” Mr. Harris said.

For Ms. Lynn, the iPhone, with the special software, is cheaper, more effective and essential. “Technology has become as important to me as air, food, water,” she wrote.


Monday, September 14, 2009

Calling All People With ALS, Caregivers, ALS Not-for-Profits

Often the ALS cause doesn't get its rightful place in disability discussions. That may be because of the quickly changing nature of ALS, the communication challenges, exhaustion, or the short remaining lifespan that is associated with ALS.

Here's a wonderful chance to speak up and be heard and to contribute your perspectives to the discussions regarding disabilties and good public policy -- The National Summit On Disability Policy - 2010.

http://www.neweditions.net/ncd2010/nominations.html

The due date for delegate applications is October 15.

Please consider adding the voice of ALS to our disability policies.

Please spread the word.

Saturday, September 12, 2009

Derek Jeter Helps Us Remember The Greatness Of Lou Gehrig

He broke Lou's franchise hit record tonight.

Here's a nice article from the New York Times...

Dorine Gordon, the president and chief executive of the ALS Association Greater New York Chapter, also issued a statement congratulating Jeter. “Derek epitomizes so much of what we admired in Gehrig,” her statement said. “Each skillfully filled their roles as team captains with strength, determination and humility.”

Friday, September 11, 2009

Michael Goldsmith, Cornellian and Our Hero

Please be sure to read the whole article, even if you're familiar with Michael Goldsmith and all he has done 4 ALS...

http://cornellsun.com/node/37934

God bless Michael Goldsmith.

Whence All The Website Traffic Here Today?


Website traffic to the item below on the benefit for widows and widowers who lost veteran spouses to ALS took a big spike today. Thanks for spreading the word.


One of the referring sites is AirAmerica. Nestled on their home page between two features on Joe Wilson is a nice mention of ALS in the military and the benefit for widows and widowers ...


Following is a link to their feature. I encourage you to listen to the audio that covers much on the concerns over the astronomically increased incidence of ALS in military veterans.



Thanks for all who are helping to spread the word!

Wednesday, September 9, 2009

Pssst... Why Is This ALS Tidbit Such A Well Kept Secret?

Following is from the PVA Minnesota Chapter (May, 2009) newsletter:

http://www.mnpva.org/Newsletter/MayNewsletter2009.pdf



National Service Officer’s Report – Tami Andersen
Survivor’s Benefits for Widows of Veterans that passed from ALS

What are the benefits that a widow/widower can receive?
During an already difficult time for a widow/widower when their spouse passes away so quickly from Amyotrophic Lateral Sclerosis (ALS), there is some comfort to know that there are benefits from the Department of Veteran’s Affairs (VA) to assist them. When the primary or contributory reason for death is a service connected disability or disease; the widow/widower may be eligible for the Dependency and Indemnity Compensation or DIC for short, benefit. The DIC benefit is a monthly monetary award that is paid the first of every month for the previous month of benefit. Currently that amount is $1,154.00; with an additional monetary benefit for dependents and/or the need for aid and attendance.
Two other benefits are the burial and plot benefits. The VA currently will pay $2,000.00 to a widow/widower as a burial benefit and $300.00 as a plot allowance benefit.

What paperwork is needed to submit a claim for DIC and Burial/Plot
Benefits?

A VA form 21-534 “Application for Dependency and Indemnity Compensation, Death Pension and Accrued Benefits by aSurviving Spouse or Child” will need to be completed. Along with the VA form 21-534; a certified copy of the veteran’s DD214 (discharge document), a copy of the death certificate of the veteran stating the primary and contributory reasons for death, and a copy of the marriage certificate will need to be enclosed. A VA form 21-530 “Application for Burial Benefits” will need to be completed; along with the VA form 21-530; an itemized paid statement/invoice from the funeral home and a statement/invoice for the plot cost will need to be enclosed.

What is the time frame for filing a claim?
The law for service connection of Amyotrophic Lateral Sclerosis (ALS) became effective September 23, 2008. Therefore, if a veteran passed away from ALS before September 23, 2008, the effective date is September 23, 2008. Otherwise, when a surviving spouse submits a claim within one year of veteran’s death; the claim will be effective the date of death. If the claim is submitted after the one year period of date of death, the claim will be effective the date of claim.

How to get started?

Contact your local Paralyzed Veteran’s of America National Service Officer (NSO) to set up a meeting to complete the paperwork. The NSO will need to have a VA form 21-22, “Appointment of Veterans Service Organization as Claimant’s
Representative” completed by the surviving spouse in order to submit and monitor the claim on your behalf. Once the claim has been submitted, the NSO will track it through the VA process to be sure it gets completed in a timely manner and is accurate. Contact your NSO at 612-970-5988 or 1-800-795-3609 with any questions throughout and after completion of the claim.



If I'm understanding this correctly, if Grandma was a Navy nurse during WW II and died many years later from ALS, Grandpa may be eligible for some benefits. If Uncle Joe served in Viet Nam and died from ALS many years later, then Aunt Jane, his widow, may be eligible for some help. If Cousin Mary served in Nebraska and died from ALS ten years ago, then her widower Cousin Mike may be eligible for benefits.

Widows and widowers of PALS who died many years ago should get their claims in by September 23 in order to maximize their benefits!

If I'm not understanding this correctly, I'll welcome some enlightenment.

This could be a huge help to many widows and widowers who may not have a clue that they are entitled to the benefit. Please help spread the word.

Thursday, September 3, 2009

Maybe A Rest Will Do Me Some Good

How many tens of thousands of people with the mysterious symptoms of ALS have said that?




Here is another wonderful piece from the New York Times on Lou Gehrig --

http://www.nytimes.com/2009/09/04/sports/baseball/04gehrig.html?hp

September 4, 2009


Jeter Nears a Record Gehrig Couldn’t Savor
By
RICHARD SANDOMIR

His body betraying him for reasons he could not understand, Lou Gehrig came to bat at Yankee Stadium in the fourth inning against the Washington Senators on April 29, 1939.
He had only three hits in the young season.

But he had 2,720 in his magnificent career and was playing in his 2,129th consecutive game.
His power was almost gone.
A degenerative neurological disease that would be named for him was decimating his body. Gehrig was 35, only weeks from turning 36.

Derek Jeter, another 35-year-old Yankee captain, has a different and much happier story. He is having one of his best seasons, batting .333, with 17 home runs, more than his total in any of the last three seasons.

And with 2,712 hits, he is close to passing Gehrig as the
Yankees’ career hit leader.
In 2009, Jeter can look forward to several more seasons and if he stays healthy, to 3,000 or more hits. He is signed through next season and
has said he might still be playing at shortstop when he’s 41.

As Gehrig came to the plate at the end of April 1939, he had just over two years to live.
His hitless game on April 24
prompted Arthur Daley of The New York Times to say that Gehrig’s batting average “has reached an alarming state of anemia.”

Even the next day, with two hits against the Philadelphia Athletics and his only run batted in of the season, Gehrig could not celebrate a respite from the indignity of failure. When a fly ball fell in for a hit (the left fielder was playing him to pull), Gehrig could not make it to second for what would have most likely been a double if he had been healthy. He rounded first base, but could neither return to first nor reach second.

He did not even wait to be tagged. “He just lowered his head and jogged slowly back to the Yankee dugout,” Jonathan Eig wrote in his book
“Luckiest Man: The Life and Death of Lou Gehrig.”The Times reported it differently, saying he was tagged out in a “reckless attempt” to stretch a single into a double.

Yet, that day Gehrig felt optimistic enough that his ailment was temporary that he ordered three new bats from
Hillerich & Bradsby, Eig wrote. They weighed 33 ounces, lighter than those he used in 1938.

April 29 was a Saturday, with 11,473 fans watching the Yankees play the Senators on a chilly, cloudy afternoon. The Yankees’ Lefty Gomez was pitching against the Senators’ Ken Chase.
Gehrig was fifth in the Yankees’ lineup, behind Frank Crosetti, Red Rolfe, Jake Powell and
Joe DiMaggio.

In his fourth season,
DiMaggio was now the team’s superstar, not Gehrig, whose .295 batting average in 1938 represented a worrisome and dramatic fall from his .351 average in 1937. In 1938, DiMaggio hit .324 with 32 home runs and 140 R.B.I. In 1939, he was on his way to hitting .381, his career best.

In the second inning, Gehrig walked against Chase, a left-hander.

Before fans could will Gehrig another hit, they were distracted by a more immediate concern: DiMaggio was hurt. As he ran to catch up with a hard line drive hit by Bobby Estalella, his right leg got stuck in the mud, tearing muscles just above his right ankle. He writhed on the grass for eight minutes, The Times reported. He limped off the field and was later quoted as saying, “I heard something snap in my leg” and “I felt something crack.”

An inning later, Gehrig singled but few, if any, could imagine it would be his 2,721st and last.
There was no announcement, no acknowledgment, no tip of the cap, no curtain call.
Bill Dickey came up next and singled. Gehrig stopped at second but advanced no farther.
The next day, Gehrig came to bat four times with men on base and did not get a hit. After the game, “there was a buzz of disgruntlement in the Yankee clubhouse,” Ray Robinson wrote in
“Iron Horse: Lou Gehrig in His Time,” a 1990 biography. Some of his teammates doubted that they could win with Gehrig hitting .143.

With the Yankees heading to Detroit, The New York Mirror wrote, “Captain Lou Gehrig isn’t hitting and may be demoted from his present slot.” The New York Sun suggested that Gehrig’s “benching seems imminent.”

Gehrig, not Manager Joe McCarthy, took the initiative. On May 2, Gehrig said he was benching himself. “Maybe a rest will do me some good,” he said. “Maybe it won’t. Who knows? Who can tell? I’m just hoping.”

Wednesday, September 2, 2009

Where Were You One Year Ago?

Last year immediately before the August congressional recess, ALS advocates were disappointed that one Senator was successful in blocking passage of the ALS Registry Act.

Shortly after the recess, on September 23, 2008, the act passed the Senate and was quickly signed into law.

Now we still wait for the deliverable. It is an excruciatingly long wait for the thousands of Americans with ALS and its ticking clock.

As we approach the September 23 anniversary of a legislative victory, we hope that there will be news regarding the registry.