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.

Thursday, November 26, 2009

Thursday, November 19, 2009

The Mannequins Speak Volumes In The Miami Herald

If you've not visited the website behind this display, take a deep breath and click this link

It's raw and edgy, but so is ALS, and this honest, graphic display has captured the attention of the media.

Wednesday, November 11, 2009

As We Honor Our Nation's Veterans Today

Please make it your personal mission to enlighten at least one American about the increased incidence of ALS in our veterans.

This should be a national outrage. We need national resolve to get to the bottom of it.

We need to stop telling ALS advocates who already know and spread the word to the press, to the medical community, to legislators, to veterans groups, to everyday taxpayers, to voters, to the guy in the next cubicle, to the person waiting for a flight,...
Fringe benefits of military service used to include educational assistance and home loans. Now those who volunteered and served get a terrorist of a disease. That's just not right.

Sunday, November 8, 2009

It's Time To Write Some Thank You Letters

Here is a wonderful item in the Global Post about Michael Goldsmith and 4 ALS...

Opinion: ALS, Lou Gehrig and Michael

How one man's struggle with ALS called on Major League Baseball to take a stand.

By Mark Starr - GlobalPost Columnist
Published: November 8, 2009 10:16 ET
BOSTON — If you’re in this journalism business long enough, you are privileged, every once in a while, to play a small part in somebody else’s far more meaningful drama.

About a year ago, I had a walk-on part in Michael Goldsmith’s life. A mutual friend had asked me if I might use my connections at Newsweek, where I worked for almost 30 years, so that Michael could share his story via the magazine’s popular “My Turn” column.

As a result, last November it became his turn.

Goldsmith, a law professor at Brigham Young University, wrote about the “death sentence” he had received two years earlier at age 55, a diagnosis of amyotrophic lateral sclerosis (ALS), better known in this country as Lou Gehrig’s disease. And he told how in his sorrow, he had reconnected with baseball, the game, indeed the love affair of his youth.

Baseball — he even managed to attend a fantasy baseball camp — turned out to provide considerable comfort as he faced the greatest and final challenge of his life. But the sentimental did not completely override the logic of a legalistic mind. And so an obvious question occurred to him.

Why hadn’t the game with which ALS is uniquely linked — a disease which provided, arguably, the most famous non-game moment in baseball history, Lou Gehrig’s farewell at Yankee Stadium on July 4, 1939 — done more to lead the fight against ALS?

ALS, a progressively paralyzing neuromuscular disorder, desperately needed a champion. It afflicts relatively few people compared to other diseases; on average less than 10,00 people a year in this country have been diagnosed with ALS since Gehrig’s “luckiest man” speech. (That moment became even more iconic after Gary Cooper starred in a 1956 Hollywood biopic.)

But while the cause is widely known, it has struggled to raise funds; virtually no progress has been made to combat ALS.

With the 70th anniversary of Gehrig’s farewell approach, Goldsmith essentially called out baseball and challenged the stewards of the game to accept historical responsibility and to lead the charge. A few days later
George Vecsey echoed Michael’s message in his column in The New York Times.

Major League Baseball rose to the occasion. Baseball commissioner Bud Selig told me that upon reading Goldsmith’s essay, he knew “it was the right thing to do.” But Selig said that the MLB initiative would never have emerged as such a large effort without Goldsmith’s powerful voice and energetic efforts.

On July 4, Major League Baseball launched an ALS Awareness campaign, commemorating the 70th anniversary not just in Yankee stadium, but also in every league ballpark where baseball was played that day. And MLB pledged that the anniversary events were just the beginning of an ongoing commitment to the ALS cause.

For that occasion, Goldsmith, who had grown up in New York, made what he knew was likely his final trip to his hometown. He took the field in Yankee Stadium and threw out the ceremonial first pitch to a standing ovation. “ALS robs us of our future,” he emailed me afterward. “MLB’s decision has produced renewed hope.”
He knew, of course, that any hope would come too late for him. On Sunday, Nov. 1, one year to the date that his essay appeared, Michael Goldsmith died of respiratory failure due to ALS.
He was 58 years old.

Major League Baseball truly rose to the occasion. It's time for us to take a few minutes to write Commisioner Selig some thank you letters and to urge him to continue 4 ALS. It was simply the single most effective ALS awareness event in history. Here is his address:

The Office of the Commissioner of Baseball
Allan H. (Bud) Selig, Commissioner
245 Park Avenue, 31st Floor
New York, NY 10167
Phone: (212) 931-7800

Please don't put it off. Please just do it. Michael Goldsmith taught us all the value of just doing things.

Tuesday, November 3, 2009

Gonna Sit Right Down And Write Myself A Letter

ALSadvocacy is dusting off an item from last October... in case it might be of help to anyone submitting a letter-to-the-editor as part of the ALSA campaign.

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 266 words (down from 328 a year ago :-) ).

> 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 --

Newsweek Speaks

Let's hope this strikes a chord with Major League Baseball. July 4 should be the day 4 ALS. It has gone on too long. Michael Goldsmith's death one year to the day after Newsweek published his op-ed is a stinging reminder of the viciousness of ALS.

Thank you, Newsweek, for these words today:

In Memory of Michael Goldsmith, Baseball Fan and ALS Activist

Tuesday, November 03, 2009 12:32 AM
By Kate Dailey
Michael Goldsmith, the baseball fan who penned the Newsweek My Turn column that became a literal game-changer for Major League Baseball, died this week at age 58.

Goldsmith suffered and finally succumbed to amyotrophic lateral sclerosis, or ALS. Also known as Lou Gehrig's disease, the degenerative condition robbed Gehrig of his major leagure career and robs 30,000 Americans at any give time of their ability to walk, speak, and eventually breath. It's a rare disease -- striking 2 out of 10,000 -- but a brutal one, agonizing for both those who suffer from the disease and those who love them.

Gehrig is the most famous face of ALS, but it was Goldsmith who suggested, in a NEWSWEEK My Turn column that ran on November 1, 2008, that baseball join the fight in a more public and organized way:

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.

The column soon caught the attention of the New York Times and MLB commissioner Bud Selig, and the plan Goldsmith envisioned was put into action. On July 4th of this season, the 70th anniversary of Lou Gehrig's "Luckiest Man" speech, players wore commemorative patches. ALS groups sold awareness buttons, and ballparks played video of Gehrig's noble farewell on the jumbotrons. Goldsmith was honored at Yankee Stadium that day, throwing out the ceremonial first pitch. His family later recalled how much he savored that experience -- despite being an Orioles fan.

Commissioner Bud Selig issued a statement about Goldsmith's passing, saying he was "deeply saddened" and offering his condolences. Game 5 of the World Series, played yesterday in Philadelphia, was dedicated to Goldsmith's memory. Throughout the game, fans were encouraged to donate to ALS charities by visiting the MLB blog 4ALS Awareness. According to the George Vecsey, who wrote about Goldsmith's NEWSWEEK column in the Times, "Commissioner Bud Selig said Goldsmith believed in the power of one person to make an impact, and he promised that Goldsmith’s aspirations would continue to be honored."

It would be a tribute to both Gehrig and Goldsmith and a testament to the enduring power of sports, teamwork, and camaraderie if the entire league took that "comprehensive action" Goldsmith suggested. It's worth nothing that the Philadelphia Phillies, who are currently trying to battle their way out of a 3-2 deficit against the Yankees in the World Series, have raised over $11 million in the past 25 years through their charity work with The Greater Philadelphia ALS Society. A league-wide campaign to actively fight ALS and support those who suffer from it would go a long way to aid the cause and to bring back some lost dignity to America's Pastime.

Aside from being a baseball fan, Goldsmith was the the Woodruff J. Deem professor of law at Brigham Young, and a husband, father, son, and brother. We at NEWSWEEK offer his friends and family our deepest sympathies.

Monday, November 2, 2009

If ALS Advocacy Had An EKG, This Is How It Would Look

This picture is from the traffic report from this website for the second half of 2009.

This site gets a nice stream of traffic that has been steady and larger than we ever expected.

See the big spike? Something interesting happened in late June. Major news outlets ran features on ALS. The buildup to July 4 and 4*ALS generated a huge amount of website traffic that found this site while looking for information on ALS.

Michael Goldsmith hit one out of the park.

p.s. Now MLB will honor him while baseball is on the big World Series stage.

A Hero Has Died

Michael Goldsmith died yesterday.

On one day, last July 4, the eyes of the world were on ALS thanks to Michael Goldsmith.

He did what tens of thousands of professionals and volunteers had never accomplished before. He made one day, July 4, an important day 4*ALS.

Thank you Michael Goldsmith. We are incredibly sad today but trust that since God took you home on All Saints Day that your rewards will be great. You not only had a "can do" attitude, but you also "did."

November 2, 2009
Michael Goldsmith, Raised Awareness of A.L.S., Dies at 58

Michael Goldsmith, who battled amyotrophic lateral sclerosis — Lou Gehrig’s disease — and was honored in Yankee Stadium on July 4 on the 70th anniversary of Gehrig’s classic farewell speech, died Sunday. He was 58.

The cause was respiratory failure from A.L.S., according to his son, Austen Goldsmith. Mr. Goldsmith died in a hospice at St. Peter’s Hospital in Albany, where he had been living since early August, according to his son.

Mr. Goldsmith, the Woodruff J. Deem professor of law at Brigham Young, spent his final three years fighting the same disease that struck Gehrig in 1939 and has come to be known as Lou Gehrig’s disease.

After the diagnosis in 2006, Mr. Goldsmith — a New Yorker who grew up rooting for the
Baltimore Orioles — attended a fantasy camp run by the Orioles. In November 2008, he wrote a guest column in Newsweek, calling on Major League Baseball to do more to fight the disease that killed Gehrig on June 2, 1941.

A.L.S. is “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord,” according to the
A.L.S. Association.

In response, M.L.B. held ceremonies on July 4, 2009, the 70th anniversary of Gehrig’s speech in which he said he was “the luckiest man on the face of the earth.” In 15 major league stadiums, teams and fans were encouraged to donate money.

Mr. Goldsmith flew in from Utah with his family to throw out the ceremonial first pitch. Accompanied by his son, Mr. Goldsmith stood near home plate and made an underhanded flip to
Mark Teixeira, the Yankees’ first baseman.

“He promised they would win the game for us — and they did,” the son said. Michael Goldsmith refrained from telling Teixeira that he was an Orioles fan.

“Being on the field with my father was the single greatest moment of my life,” Austen Goldsmith said Sunday. “I think he was holding on for that.”

Mr. Goldsmith’s condition deteriorated, and in August he was moved from Utah to be closer to his mother, Anitta Goldsmith, 80, who was born in Austria and moved to what was then called
Palestine in 1939. Michael Goldsmith was born in Israel on March 5, 1951, and in 1955 the family moved to New York, where he attended Forest Hills High School in Queens. After graduation from Cornell in 1972, he attended law school at Cornell, graduating in 1975. He worked as an assistant United States attorney and later served as a counsel to the New York State Organized Crime Task Force.

He continued to teach at Brigham Young after the A.L.S. was diagnosed.
“I have spent more than two decades exhorting law students to take a proactive ‘can do’ approach to the law and life in general,” Mr. Goldsmith wrote via e-mail in late June. “And I have tried to lead by example, showing them how creativity and commitment to a cause can produce positive results. The success of this effort demonstrates yet again how ‘the power of one’ can make a difference.”

One of his best friends from their Cornell days, Aric Press, editor of
The American Lawyer, said on Sunday: “In the last few months he communicated with a mouse and synthesizer, using the last strength in his right hand. It was very hard to know that inside his mind was still working.”

Mr. Goldsmith is survived by his wife, Carolyn Goldsmith, and his two children from a previous marriage, Jillian Goldsmith and Austen Goldsmith, both of New York, as well as two sisters, Lynn Goldsmith and Edna Goldsmith, and their mother, Anitta Goldsmith of Albany.