ALS Awareness - The Year 2009 In Review

It all boils down to one determined, talented man with ALS and one glorious day in Major League Baseball last July 4. This was the pinnacle of ALS awareness. This showed ALS to millions of Americans. This reminded us all of our continuing cluelessness about Lou Gehrig's Disease. ALS took Michael Goldsmith from us in 2009. Can we follow his lead in 2010?

Department of Defense Funding Continues Via ALSRP

Following is an announcement from the ALS Association Washington, DC, office regarding the funding within the DOD appropriations legislation that was passed by the Senate on Saturday:

http://www.alsa.org/news/article.cfm?id=1574

The U.S. Senate has appropriated an additional $7.5 million for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a 50% increase over last year!

Lest We Break Our Arms Patting Ourselves On The Back For Our Accomplishments

This morning I googled for "DOD appropriations ALSRP" and found this --
http://schemera.blogspot.com/2008/10/not-enough-dammit.html

It's over a year old, but it's pertinent.

Click on the pic of the hockey team to go to the most recent item on that blog.

Read one young man's tortuous journey trying to survive ALS.

He was right. It wasn't enough, was it?

ALS Registry Development Funding Continues

Following is a statement issued yesterday (December 10) by the ALS Association Washington, DC, office:

A few minutes ago, the House of Representatives passed legislation that will appropriate an additional $6 million for the National ALS Registry at the Centers for Disease Control and Prevention (CDC). This is a 20% increase over last year and demonstrates that Congress has made funding for the Registry a top priority - something that would not have happened without your efforts to contact Congress and tell them why more must be done in the fight against ALS.

The Senate is expected to vote on the bill as early as next week and we will keep you updated as the legislative process continues.

Registry Begins to Collect Data
As we reported earlier this year, the CDC is in the process of identifying ALS cases from throughout the United States utilizing data obtained from national databases, such as Medicare, Medicaid and the Veterans Administration. The Agency also has launched the first phase of the ALS Registry website. When fully launched in the second half of 2010, the site will enable people with ALS to self enroll in the registry.

However, the additional $6 million in funding provided by Congress not only will allow the CDC to continue its current efforts, but also potentially conduct more robust data collection at the state and local level in order to identify any cases that are not captured through the web portal and national databases.

For additional information about the National ALS Registry, including about the web portal and how people with ALS will be able to enroll in the registry, please click https://ssl.capwiz.com/alsa/attachments/2_ALS_Registry_Update__Dec_2009_.pdf

Thank you to everyone who has contacted Congress and helped to make this victory possible!

Curtain Up! Light The Lights! Take II

Rumor has it that on CBS Sunday Morning, Angela Lansbury will be interviewed by Katie Couric, and Ms. Lansbury's work for the ALS Association will be mentioned.

The great news is that Katie Couric understands ALS from her work with the Estess family and Project ALS! Here's hoping that they both badger away at our existing lack of ALS awareness and national resolve to find the cure.

Perhaps Angela Lansbury's work in the new production of Sondheim's "A Little Night Music," will earn her another Tony Award, and that this time we might see a red wristband and hear a mention of ALS on Tony night. In the meantime, we'll be watching on Sunday morning.

CBS has already covered the Sondheim Award to be presented to Angela in the DC area in April, 2010 (just few weeks before Advocacy Day). http://www.cbsnews.com/stories/2009/11/05/ap/entertainment/main5537411.shtml?tag=contentMain;contentBody Oh, that there might be some dramatic flair to give ALS a little splash and spotlight at that gala.

MLB, We Should Be Thanking YOU!

Here is a nice item from a thankful MLB organization. We should all be thankful for MLB and Michael Goldsmith today.

http://mlb.mlb.com/news/article.jsp?ymd=20091122&content_id=7700678&vkey=news_mlb&fext=.jsp&c_id=mlb

The Mannequins Speak Volumes In The Miami Herald

http://www.miamiherald.com/news/miami_dade/northwest/story/1337284.html

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

www.stealingpieces.org .

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

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.

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

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.

Mandy Patinkin... Three Rivers... ALS... on CBS... Sunday

Here's the trailer --

It's Time To Write Some Thank You Letters

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

http://www.globalpost.com/dispatch/worldview/091106/als-lou-gehrig-and-michael

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.

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.

http://als-advocacy.blogspot.com/2008/10/alsa-letter-campaign-for-veterans-day.html

Personal notes from alsadvocacy.com --

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 --http://www.nytimes.com/ref/membercenter/help/lettertoeditor.html

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:

http://blog.newsweek.com/blogs/thehumancondition/archive/2009/11/03/in-memory-of-michael-goldsmith-baseball-fan-and-als-activist.aspx

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.

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.

http://newyork.yankees.mlb.com/news/article.jsp?ymd=20091102&content_id=7604164&vkey=news_nyy&fext=.jsp&c_id=nyy

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."

From the New York Times:
http://www.nytimes.com/2009/11/02/sports/baseball/02mgoldsmith.html

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

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.

This Should Be Required Listening For Every American

Thank you, New York Times, for the patient voices of ALS.

What American has not heard about the balloon hoax? None, you say?

What American has not heard about ALS? Many, you say? It's time to use these marvelous voices captured by The New York Times to spread the word about something truly important. This is a matter of life and death.

These people are American heroes.



http://www.nytimes.com/interactive/2009/10/19/health/healthguide/TE_ALS.html?ref=health

Raise A Hot Cup Of Coffee And Toast Dane Boersma

Sad news from the Portland Business Journal

http://portland.bizjournals.com/portland/stories/2009/10/12/daily38.html

Thursday, October 15, 2009, 2:46pm PDT
Dutch Bros. Coffee cofounder dies
Portland Business Journal

Dane Boersma, who with his brother Travis founded Dutch Bros. Coffee, passed away Thursday due to complications from amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

He was 55.

Dane Boersma and his brother founded Grants Pass-based Dutch Bros. in 1992. The company now operates 150 locations in Oregon, California, Washington, Idaho, Nevada, Colorado and Arizona. It has 80 full-time employees.

The company was recently recognized by the Portland Business Journal for its philanthropic efforts. Dutch Bros. contributed $525,000 to various charities across Oregon last year, and another $225,000 in other states in which it does business.

Donations in Dane’s name can be made to Dane’s Drive, a Web site created by Dutch Bros. to raise money for Lou Gehrig’s/ALS disease research. All proceeds benefit the Muscular Dystrophy Association, ALS Division, to find a cure for this fatal disease. A link to Dane’s Drive can be found on the company’s Web site, www.dutchbros.com.

A public memorial service will be held on Monday, Oct. 19 at 1:00 p.m. at the Parkway Christian Center, 229 N.E. Beacon Drive in Grants Pass.

But Sometimes It's Hard To Fight Smart When It's Not A Fair Fight

Op-ed in Neurology Now, a publication of the American Academy of Neurology, by Richard S. Bedlack, M.DPh.d., M.Sc., Director of the Duke University ALS Clinic:

http://www.neurologynow.com/pt/re/neuronow/pdfhandler.01222928-200905050-00028.pdf;jsessionid=KVrcbl6MpgN1KwlF2sZL8P2LbhT2vrv82Cq5c76sJWL1fLjjg6Gc!-1127164547!181195628!8091!-1

Tick, Tick, Tick

AT LONG LAST there was some national media mentioning ALS in NFL players. Here's the 60 Minutes story on the aftermath of head trauma in the NFL.


CBS 60 Minutes Story



Look for the mention of Wally Hilgenberg.


Here is a list of professional football players with (or who have died from) ALS. If there are more, please let me know and I'll add to the list.

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg

It seems worthy of some investigation. It may have nothing to do with head trauma, but who knows? It's outrageous that such a "who knows" disease has been permitted to go on like this.

Perhaps the NFLPA should be interested.

"Coming Soon" News On The ALS Registry

Unfortunately it's not coming soon enough. From the following communication from the ALS Association Washington, DC, office, launch is expected to be in late 2010. Don't get as excited as I did when you read the first sentence. The CDC has simply launched five flat web pages with helpful information on ALS and the registry concept.

Today, October 8, the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) is launching the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry. The website is available at www.cdc.gov/als.
The ALS Association also will host a link to the Registry website on our homepage at www.alsa.org.

In this initial phase, the ATSDR will provide up-to-date information about the registry, including answers to frequently asked questions such as who can enroll in the registry, whether enrollment is mandatory, and who will have access to the registry. The site also will include helpful information about the disease itself, including links to information about ALS research and clinical trials as well as to organizations, like The ALS Association, that provide assistance and support to people with ALS and their families.

In the next phase, the website will enable people with ALS to enroll in the registry. However, before that can happen, ATSDR must first obtain an Institutional Review Board (IRB) approval and other approvals required by law to ensure that personal information collected by the registry is kept private and protected from misuse. This process already is underway and The ALS Association will assist in any way we can to secure the necessary approvals in order to speed enrollment in the registry.

Enrolling in the Registry
As ATSDR pursues the approvals necessary for the next phase, we are partnering with the Agency to keep the ALS community informed and we will notify PALS as soon as they can self-enroll via the ALS Registry website. If you would like to receive this notice, please visit The ALS Association's website at http://capwiz.com/alsa/mlm/signup/
and sign-up to be an ALS Advocate. Please select ALS Registry when signing- up. This is especially important because, due to privacy rules, PALS will not be able to request that ATSDR notify them about the status of the registry, including when they can begin to enroll.

If you have any questions about this update, please contact The ALS Association at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.
Thank you

Action Item From ALSA

Following is a communication sent from ALSA Washington, DC, office. I took the liberty of making bold several critical elements. Your messages to Senators are urgent. You snooze, PALS lose!

My name is Jeff Faull and I am the married father of two beautiful daughters. I was diagnosed with ALS in 2007 at the age of 38 after serving two tours of duty in the United States Navy. I am writing to ask that you join me in urging Congress to increase funding for the ALS Research Program (ALSRP) at the Department of Defense.

The ALSRP is the only program at the DOD dedicated specifically to ALS, a disease that strikes veterans at twice the rate as the general public. But what really makes this program so vital is that it is supporting translational research with the explicit goal of finding a treatment for ALS - something that will benefit everyone fighting this disease.

Earlier this year, I joined nearly 1,000 fellow advocates - PALS, caregivers, families - in Washington, DC for National ALS Advocacy Day. Together with my wife Tammy and 15 year-old daughter Tiffany, we met with our Members of Congress and requested they provide $10 million for the ALSRP, double what was provided last year. I am proud to say that our meetings made a difference - The House of Representatives met our request and passed legislation that included $10 million for the ALSRP!

But, the fight is not over. That's because the Senate version of the bill does not include funding for the ALSRP. And with a House-Senate Conference Committee expected to make the final decisions on funding for the Department of Defense within the next week, it's possible they may eliminate funding for the ALS Research Program.

That's why I'm asking for your help today. Available on The ALS Association's website is a letter you can send to your Members of Congress. Please use that letter to tell Congress how important this program is to those of us living with ALS. Let them know that research made possible by the ALSRP not only will benefit military veterans, but all people with ALS. It can help us find an effective treatment for a disease that currently has none.

The letter can be found here: http://capwiz.com/alsa/home/. Please act today. It's simple to do, but it can mean the difference between $10 million for ALS research or zero. So join me in this fight. Together, we will continue to make a difference.

Sincerely,

Jeff Faull

McEwensville, PA

Dx 2007

P.S. At National ALS Advocacy Day in May, I had the honor of participating in a wreath laying ceremony held at Arlington National Cemetery to pay tribute to those we have lost in the war against ALS. Joining me for the ceremony were fellow veterans and PALS Jim Thew of Illinois and Ken Patterson of Florida as well as Sharon Harrison of Virginia, who lost her husband, a Vietnam veteran, to ALS.

The ALS Association produced a video of the ceremony to help raise awareness of the disease and build support for our cause. I invite you to view the video here: http://www.alsa.org/policy/article.cfm?id=1516.

As Veterans Day approaches on November 11, please share this video with everyone you know. Post it to your Facebook page, send it to your email list. Help us continue to raise awareness of this disease and its impact on veterans and all Americans. Most important, help us build support for our cause so that we can find a treatment and cure as soon as possible.

Thank you!

Can We Learn From Another "A" Disease?

There are a number of articles in today's news about the prevalence of autism being higher than was ever thought.

http://www.usatoday.com/news/health/2009-10-05-autism-increase_N.htm

By Rita Rubin, USA TODAY

Two new government studies suggest autism spectrum disorders are becoming more common in children in the USA. However, researchers say, it is not clear how much of the increase is a result of more frequent and earlier diagnoses and how much is a result of a real rise in the conditions...

Ten years ago I watched a parent with a very young child with suspicious symptoms being dismissed by multiple physicians as a worry-wart. Only with a mother's relentless and heroic pursuit of a correct diagnosis was the autism case recognized and dealt with early. Autism was perceived as an unlikely and "rare" condition ten years ago. There are no biomarkers, so an easy slam-dunk diagnosis with a lab test is not possible. It takes expertise and judgement and elimination of other conditions to reach the diagnosis. It also takes a willingness on the part of a physician to recognize it. Today pediatricians and primary care physicians realize that one in ten eight-year-olds probably has an autism spectrum disorder. It is recognized and dealt with early because physicians know what to look for and know that early intervention is critical. To add to the awareness, those overlooked infants from ten years ago are in school today and their challenges are obvious not only to their parents but also to our school systems. What a difference ten years have made.

Does any of this sound familiar? ALS is perceived as a "rare" disease. Doctors are programmed that they may see at most one case in a career. ALS also has no biomarkers for that easy slam-dunk diagnosis. It takes some judgement to recognize it, particularly in early stages. It takes a willingness to see the clues and follow them to the correct diagnosis.

To add to the medical blinders when it comes to ALS, physicians know that they can't cure it. Is Dr. Freud at work when a physician misses an ALS diagnosis? Is something in the back of the doctor's mind saying "no harm no foul... I couldn't have done anything to cure it... the patient was going to die anyway?"

Piling on to healthcare's looking for everything but ALS in a patient is the fact that the "rare" designation carries some benefits related to orphan drug status, etc. That word rare is a catch-22. The technical designation "rare" has some regulatory benefits. The word rare holds back the societal recognition of the ALS problem.

If we had some large-scale studies and a working registry with aggressive efforts to identify cases of ALS, would some startling new prevalence numbers suddenly cause physicians to pay attention to that little old lady will slurred speech and a weak neck? With ALS, if that particular case isn't diagnosed within a few months, the patient will be dead without any reference to ALS in her medical records or on her death certificate.

Perhaps ALS is not so "rare." Perhaps if a couple of studies break that myth that we'll see the level of recognition of the disease and early diagnosis that we see in autism today.

When you pay attention, ALS isn't so rare. We have failed to get society to pay attention.

Autism numbers grow and healthcare professionals and parents who are now paying attention have a lot to do with that. The more they see, the more they see.

Give This Campaign An "A" In Creativity

...and an "A+" in awareness-raising.

Twitter is quite atwitter today with the one-day Tweet for ALS campaign.

The CEO of Quicken Loans is behind it and all proceeds go directly to the ALS Association Michigan Chapter.

They're out to raise $10K today and are in the process of raising the noise level about ALS... a good thing all around.

http://www.tweetforals.com/

...and if you tweet, follow @tweetforals

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.

Perhaps The Best Tagline Of All For An ALS Organization Would Be...

ALS - Do you know what that is?

http://alsspreadtheword.blogspot.com/2009/09/dear-als-organizations-perhaps-its-time.html

People In Greensburg, IN, Get ALS Awareness

What a great department store window display!

http://www.greensburgdailynews.com/local/images_sizedimage_248123057/resources_photoview

Minear's Department Store rocks!