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, April 30, 2009

O.J. Brigance Is Featured on ESPN

More than 5,000 people in the U.S. are diagnosed with Lou Gehrig's Disease each year. One of these people is O.J. Brigance, former NFL player and current Director of Player Development for the Baltimore Ravens. Since Brigance was diagnosed with ALS two years ago, he has become an inspiration to the Ravens. Today, OTL tells Brigance's inspirational story.

ALS Can Spoil A Wonderful Baseball Career

Today, April 30, is the 70th anniversary of Lou Gehrig's last game.

From Wikipedia...

On April 30, Gehrig went hitless against the weak Washington Senators. Gehrig had just played his 2,130th consecutive Major League game.[22]

On May 2, the next game after a day off, Gehrig approached McCarthy before the game in Detroit against the Tigers and said, "I'm benching myself, Joe", telling the Yankees' skipper that he was doing so "for the good of the team".[34] McCarthy acquiesced and put Ellsworth "Babe" Dahlgren in at first base, and also said that whenever Gehrig wanted to play again, the position was his. Gehrig himself took the lineup card out to the shocked umpires before the game, ending the 14-year stamina streak. Before the game began, the Briggs Stadium announcer told the fans, "Ladies and gentlemen, this is the first time Lou Gehrig's name will not appear on the Yankee lineup in 2,130 consecutive games." The Detroit Tigers fans gave Gehrig a standing ovation while he sat on the bench with tears in his eyes.[29] A wire service photograph of Gehrig reclining against the dugout steps with a stoic expression appeared the next day in the nation's newspapers. Other than his retirement ceremony, it is the most-reproduced and best-remembered visual image of Gehrig.

Gehrig stayed with the Yankees as team captain for a few more weeks, but he never played baseball again.

Tom Watson Gets It When It Comes To ALS

...and he deserves our thanks.

From the Boston Globe --
Theirs was a union that delivered cheers and tears. Edwards, a Connecticut native, was on the job for all five of Watson's British Open victories, and he was the one Watson pointed to after he chipped in on the 17th hole at Pebble Beach, breaking a late tie with Jack Nicklaus at the 1982 US Open. Edwards was also still at work in 2003, months after he had been diagnosed with amyotrophic lateral sclerosis. At that year's US Open, the 53-year-old Watson turned back the clock, shot 65, and charged to the first-round lead, with Edwards, overcome with emotion and starting to look frail, soaking up the adulation the two had enjoyed on so many other occasions. It was the two of them the crowds were cheering for, not just Watson. ALS took Edwards's life in April 2004, just before Watson was to start the first round of the Masters. He was only 49.
"The thing I'll remember most about him is the courage with which he died," Watson said. "He knew he was going to die, but he had the courage to face it. 'Carry on,' he'd always say. Those were his two favorite words."

It's Hard To Find But Worth A Look

The big meeting of neurologists continues in Seattle. Take a look at the symposium abstracts. You may have to agree to look as a guest in order to get the window to open.

Where's the ALS stuff, you ask? It's under Anterior Horn. Try the Categories tab at the top and there are several Anterior Horn categories.

Maybe somebody will make some anterior airhorns to help PALS make some noise about ALS.

There Is An Important Discussion for Veterans Regarding ALS Today

Sorry for the late notice... I just found out about this. Click on image or link below for a better view.

Wednesday, April 29, 2009

"ALS Is Not An Incurable Disease. It Is An Underfunded Disease."

"ALS is not an incurable disease.  It is an underfunded disease."  -- Stan Appel, M.D. before a Congressional Committee last week

If ALS is underfunded, shame on us.  And until we fix the funding problem, people like prize4life are trying to get the limited funds we have in front of smart scientists with a sense of urgency.  Check out the new blog at

Dr. Appel's quote should be memorized by every advocate who will talk with a legislator next month.  

Tuesday, April 28, 2009

Gas Up The Winnebago...

Let's swing by Oregon, California, Washington, Idaho, Nevada, Colorado and Arizona on the way to advocacy day in DC.

GRANTS PASS, OR -- (Marketwire) -- 04/28/09 -- Dutch Bros. Coffee locations will donate proceeds from all coffee sales to the Muscular Dystrophy Association (MDA) on May 8 to raise awareness for ALS (Lou Gehrig's disease). The drive is held annually in support of company co-founder, Dane Boersma who was diagnosed with ALS in 2005. Last year, Dutch Bros. contributed $80,000 to the MDA for research and family services funding.

Nice promo. It will put ALS in front of people who never paid attention to it before. If you're in the area, please get some caffeine for yourself and your friends.

Monday, April 27, 2009

There Are Lots Of Reasons To Educate Legislative Staff Members points out a reason why Congressional staff members need to understand ALS...

by Jim Strickland
NOTE: Letters in my Q&A columns are reprinted just as they come to me. Spelling and grammar are left as is and only small corrections are made to improve readability, ensure anonymity or delete expletives that may offend some readers. This is not legal advice. You should always seek the advice of an attorney who is qualified in Veterans' law before you make any decisions about your own benefits.
Jim;I am a wife of a Vietnam veteran. My husband passed away March 2009.Before he passed away he received a 100% disability rating due to complications of Lou Gehrig’s disease. We applied in Sept of 2008 and waited for 5 m onths just to hear he was approved for 100%. It gets more interesting. I had to sign a claim of statement saying I would take over his financial affairs in Feb. 2009. Basically I was told that this was to get a change of name so the checks would come to me to cash. I have not seen check one.I called VA in Washington and the clerk on the phone tells me there are four steps I have to go through before I can “qualify” for survivor benefits! Of course I told her that that was redundant and ridiculous since David got his rating not even two months ago. She said they will need a death certificate (which they already have), and the medical information he originally submitted from Doctors locally and at John Hopkins Hospital in Baltimore (which was a nightmare out of hell). Then she said the team of whoevers makes a decision on the info submitted. THEN it goes to a group of clerks who make sure the dots and t’s are dotted and teed.I argued that that has already been done and it took six months to accomplish. She argued back saying that this new submission is for you not the deceased. But I am not a vet nor do I have ALS. They said this process will take six months again. I am flabbergasted at the incompetence of this VA administration. May I could get a job there and draw a paycheck and sit on my laurels and do scratch.What I need is for someone to help me understand this BS so I can have some peace. I saw your site and thought you could point me in the right direction.

Reply;My condolences for your loss.This is standard operating procedure for the VA. Yes, I'm serious. You aren't receiving any less courtesy and help than all the others. The VA is the most broken machine in our federal government and it won't be fixed anytime soon.I advise my clients and veterans who I work with that no matter what, plan on a 2 year wait to see any results.However...I'm advising you a bit differently.I suggest that you sort out just who your Congressional Representative is. Each Congressperson has a "Military & Veterans Liaison" or someone with a similar title in their offices. You should spend a bit of research time to figure out just who this is. Sometimes the job descriptions blur across different functions so it's worth taking a bit of time to focus on just the right person.Call and make an appointment to see whoever you determine that person to be. You aren't likely to see the Representative...the staff handles these details. A personal visit from you to meet and greet these folks may be important. They get a lot of calls like yours so you don't want to be lost in the shuffle.
Tell your story and provide as much documentation as you can. They'll ask you to sign some papers for information release and so on.That office will begin a "Congressional Inquiry". The Congressperson will write a letter on your behalf to VA explaining the issue as they know it and ask the VA, "Hey...what's up with this?"The VA then has 45 days to respond. During that 45 days you should stay in touch with the liaison who you've gotten to know. Don't let them forget you.This approach often has results that are quick and positive. There is an assigned team at the VA Regional Office who responds to Congressional Inquiries. If they see where they have totally dropped the ball, they want to fix it prior to responding to the Congressperson.Please go forward with this and let me know how it goes. If you run into other barriers, we'll go to Plan B.

Sunday, April 26, 2009

For Your ALS Advocacy Day Planning...

Here are a few of the folks who will be advocating for their causes while you are advocating for the ALS cause in DC... (notice their candlelight vigil)

(they have a Rally on the Hill on 5/12)

If you want to find more, just use your friend Google.

The bad news is that thousands of others are trying to get the ears of legislators.

The good news is that we can not only get the ears of our legislators, but we can also get ALS into the minds of thousands of police and realtors and small business owners and university advocates and Minnesotans and librarians and others who are passionate about their causes.  Many are even meeting in the same hotel as the ALS advocates.  Don't miss an opportunity to start a conversation about ALS in an elevator or the lobby.  Don't forget that you're not the only people vying for your Senators' and Represenatives' ears.

Go PALS, beat Bruins ;-)

O.J. Brigance -- Enjoy Every Moment

From Kevin Sherrington in The Dallas Morning News

Once an effervescent star at Rice and in the Canadian Football League, then an overachieving, 6-foot, 236-pound special teams ace on a Super Bowl champion, O.J. Brigance fights just to hold his head up these days.

Lawrence Ghoram leaned in to hear what Brigance had to tell him last week. The voice was weak. The message was clear.

"Enjoy every moment."

Saturday, April 25, 2009

alscanada tweets. alscanada rocks!

Twitter seemed like a solution in search of a problem when it was new.

A few folks have figured out how to really use it well (and with a purpose in mind) and make it fun.

Here is one worth a follow

Of course, alsadvocacy tweets, too, but alscanada rocks.

Is This Finally Our Launching Pad To a Comprehensive Registry?

The story about the prevalence and incidence of ALS around the Kennedy Space Center in Florida is starting to spread.

Perhaps this will finally get our national attention and national action to get to the bottom of ALS.  Simply counting noses... all of them... will be a good start.  We Americans have a love of the whole idea of space exploration.  Those flight data systems gather bazillions of data points so that the smart people at NASA can conduct safe and effective missions.  Now it's time to gather some data so that citizens can conduct safe and effective lives.

This Looks Good 4 ALS

There is a great new graphic showing on ALS Association chapter websites.

Nice look.  Nice message.

Have you made your plans for July 4 yet?  Will you be at a ballpark?  Will you be holding a 4 ALS theme picnic?

Baseball, hot dogs, apple pie, Chevrolet... and strike out ALS by engaging a nation in the cause!

Thank you, Michael Goldsmith.

Friday, April 24, 2009

There Was A Doctor In The House Yesterday!

Yesterday morning, Dr. Stan Appel testified in front of the Subcommittee on Military Construction and Veterans Affairs on behalf of, and in support of The ALS Therapy Development Institute. Chairman Chet Edwards presided over the Hearing. Attached is the testimony which is now part of the Congressional Record.

Following is the testimony (the last paragraph speaks volumes):

Good Morning. My name is Dr. Stanley Appel. I would like to thank the Chairman and the Subcommittee for holding this hearing and allowing me the opportunity to address you today about the absence of a robust government funded program to develop therapies for Amyotrophic Lateral Sclerosis (ALS).

I am the Chair of the Department of Neurology at The Methodist Hospital in Houston, and the Co-Director of The Methodist Neurological Institute; where I am also Director of the Muscular Dystrophy Association’s ALS Research and Clinical Center. Through these roles, I am engaged in both research and clinical treatment of ALS. Over the last 20 years I have been privileged to participate in the care of over 3000 patients with ALS. The experience has been made all the more meaningful because our ALS patients are extremely giving, and a deep well of courage fuels their daily actions.
Their inner strength has been a source of inspiration to us all, and has motivated me to help translate advances in the basic science laboratory to the bedside. My goal as a physician scientist is help ALS patients transform a profile in courage into a disease-free future.

I am here before this subcommittee responsible for supporting our veterans because this disease continues to take an inordinate toll on our nation’s veterans.

Since 2000, research has continued to find that those with a history of military service are at a greater risk of developing ALS than those who have not served. A study jointly funded by the VA and DOD found that those serving in the first Gulf War were nearly twice as likely to develop ALS as those not serving in the Gulf. In 2005, The Harvard School of Public Health broadened the case for military relevance. Its epidemiological study found that those with a history of any military service in the last century were 60% more likely to die of ALS than those in the general population. In 2006, the Department of Veterans Affairs requested an independent assessment of the relationship between military service and ALS. Assigned with the task, The Institute of Medicine issued its report, supporting existing evidence of an association between military service and the later development of ALS. And most recently, the Research Advisory Committee on Gulf War Veterans Illnesses’ report has called for a renewed federal commitment to identify effective treatments for Gulf War Illnesses, including ALS.

ALS, often known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects motor neurons in the brain and spinal cord. Motor neurons extend from the brain to the spinal cord, and to the muscles throughout the body. Eventually, in ALS, they die; disallowing the brain to initiate or control muscle movement. Ultimately, patients become paralyzed, and lose their ability to breathe independently or swallow. Throughout the course of the disease, the mind remains intact and unaffected. The patient becomes ‘trapped’ inside their own body.

In our country, it is estimated that ALS strikes between 5000 and 7000 people a year. The incidence rate is similar to that of Multiple Sclerosis, yet ALS patients seldom live beyond three to five years of their diagnoses, leaving at least 30,000 Americans suffering at any one time.

Though ALS was ‘discovered’ over 130 years ago, we have yet to offer a cure. Only one drug has ever been brought to market; offering no more than the hope for a few months of average life extension, and no improvement in quality of life.

I know this Committee has seen the evidence for itself. Many American heroes have sat in witness chairs, and wheelchairs, to ask Congress for help. Major Michael Donnelly was the first to bring attention to the issue. Major Donnelly was a Gulf War fighter pilot, awarded four Air Medals for completing 44 combat missions over Iraq in Operation Desert Storm. The Major worked successfully for the last years of his life to convince the government that his illness was service based. He died at 36. Four Star Brigadier General Tom Mikolajcik, USAF Ret., sat before you in July of 2007 imploring Congress to increase funding for the treatment of ALS, knowing that a treatment would come too late for him. The General is not well enough to be with us today, but conveys his appreciation for the Department of Veterans Affairs new regulations recognizing service connection to all veterans facing ALS.

At its inception (2003), the VA’s voluntary ALS Registry registered 2000 veterans suffering from ALS. While most of those heroes have passed away, the numbers imply that at least one out of fifteen ALS patients has a history of military service. This is quite staggering. These veterans, and all the patients I treat, are facing a horrifying illness; a battle with no armor. Physically, emotionally, and financially the plight is overwhelming. The cost of caring for an ALS patient can reach $250,000 a year…yet we offer them no hope.

For these veterans, their families, and on behalf of all ALS patients, I urge the VA to consider a comprehensive approach to developing therapies.

There is often a gap in the process of bringing a drug to a patient’s bedside. Translational research takes the excellent work done by the NIH and academic/basic researchers (my being one), and translates their findings toward the development of therapeutic targets. This is a particularly expensive and risky phase of research. Pharmaceutical companies; the entities that traditionally build drugs are not incentivized to assume this cost and risk, especially in the case of orphan diseases, such as ALS.

The ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts bridges this gap. It is the world’s largest ALS research program; with a state of the art lab and a full time scientific staff of thirty working solely on developing therapeutics for the treatment of ALS.

I have been on the Board of Directors of The Muscular Dystrophy Association since the 1970’s, chaired its Scientific Advisory Committee, and now chair its Medical Advisory Committee. I think you should know that the MDA believes so strongly in the work at ALS TDI that we committed the largest sum in our organization’s history to support its program.

The ALS Therapy Development Institute is effectively a biotech company, although is set up as a non-profit. Its scientific team comes from industry, with team leaders bringing an average of 15 + years of experience from firms such as Biogen Idec, Genzyme, Wyeth, and AstraZeneca. Thus, this team, unlike any other, brings true pharmaceutical experience in building drugs to this effort.

The Institute’s approach represents a multi-faceted methodology to understanding disease progression from a preclinical animal model, and efficiently translates findings to ALS clinical samples. Their capability to employ unbiased gene expression, proteomics, and genetics technologies will speed the identification of biological mechanisms amenable to therapeutic development. This type of comprehensive strategy has never before been applied to ALS research.

ALS TDI rigorously addresses the specific issues that can impact the quality of life for veterans predisposed to the possibility of developing ALS. Their program works to develop prognostic and diagnostic biomarkers to facilitate rapid treatment options, and offers a process to understand disease onset and progression. It is through such an approach that we stand the best chance to develop impactful treatments quickly.

I am not here to ask for funding for ALS TDI, although your support would accelerate the progress that I am convinced is forthcoming. I am here to at least urge your subcommittee to consider the benefits of adopting this approach.

We have the responsibility to arm our service members in the final battle they are currently only to lose. The thousands who have recently returned from engagement, and those soon to come home, may in fact encounter a final new enemy in ALS.

ALS is not an incurable disease. It is an underfunded disease. The science is ready, the technology is ready, we clinicians are ready.

Thursday, April 23, 2009

Do We Have A Cluster Next To The Palm Trees In Our Own Back Yard?

Does the most dangerous job in space exploration not involve being an astronaut?

Can we start counting noses now, CDC?

Do you think real estate prices around Titusville and Cape Canaveral just plummeted?

Should a veteran who worked at the Kennedy Space Center get extra benefits for double jeopardy?

Do we ask a lot of questions?

Columbia Alumnus Could Write To Be Heard

Interesting piece on speechwriting and Lou Gehrig's gift with words --

In our world today, most writing can be broken into one of two categories: writing to be heard or writing to be read. Writing to be heard could include: speeches, broadcast journalism (for television or radio), screenwriting (for the stage or the screen), pod casts, songwriting, advertising, public service announcements, presentations and more. Writing to be read could include: books, newspapers, magazines, e-zines, essays, short stories, analyses, business writing, dictionaries, text books, brochures and much more. Each style has unique attributes and requires attention to different details.

Speechwriting has long held a special fascination for me. I must have taken six different speech classes in high school and college, each time writing at least five types of speeches, ranging from persuasive to informational. I joined my local Toastmasters several years ago so I could write more speeches and watch others deliver theirs. In my research and writing of speeches, I studied four famous gems, eager to discover their compelling secrets.

“Four score and seven years ago…” (Abraham Lincoln, The Gettysburg Address)

“I have a dream that one day this nation will rise up…” (Martin Luther King Jr., "I have a dream")

“And so, my fellow Americans, ask not what your country can do for you…” (John F. Kennedy, Inaugural Address)

“Yet today I consider myself the luckiest man on the face of the earth.” (Lou Gehrig, Farewell to Baseball Address)

Each of the above speeches is easily recognizable to most Americans and many of them are quoted time and again years after the original delivery. Why? What makes each of these speeches stand out

Wednesday, April 22, 2009

ALS Across America 2008 - Where Are They Now?

It would be interesting for us to get updates on the people honored in last year's ALS Across America campaign. Since ALS is a pretty steady downhill slide, it wouldn't be pretty in most cases, but it would be a good educational opportunity for the public and a chance to realize that there are many with ALS who need our help and support in many ways.

Young Knoxville Mother With ALS Is Honored

“ALS Across America” recognizes inspiring young Knoxville woman
Knoxville resident Carianne Meystrik, 39, a mother of four who formerly managed the hemophilia laboratory at the University of Tennessee Hospital, now depends on family and friends to assist her with daily living needs because she has lost use of her arms and legs due to ALS (amyotrophic lateral sclerosis).

Do We Have A Teaching Moment Staring Us In The Eyes?

Today's Google news on ALS is dominated by hundreds of Stephan Hawking stories. The world clearly wants to be kept apprised of his condition and the stories show that his is a mind that comes along once in a blue moon.

Do we have an ideal moment to explain to the world about ALS... about how small percentage live long (albeit very difficult) lives... about how many more have very short life expectancies... about how ALS hits different people in different ways... about how challenging it is to deal with the disease for one with means (let alone for one with modest means)... about how there are different varieties of ALS and MND... oh, and about how the loss of motor neurons does not mean a loss of marbles?

This is a good day for us to explain ALS to the world that is following Stephen Hawking so closely.

What Really Happened 84 Years Ago...

...when Wally Pipp took himself out of the lineup and turned over first base chores for the Yankees to a kid named Lou Gehrig?

Here is a nice story about Wally's son --
by Chris Anderson in the Sarasota Herald Tribune
Somewhere along the way a man became a metaphor.

His name was Wally Pipp, and his exceptional baseball career was overshadowed by the legend of two aspirin, a headache and the game he didn't play in. Pipp's tale of bad timing transcends sports and has been made relevant again by today's rising unemployment rate and the fear in people's faces. The lesson from an occurrence almost 84 years ago:

Don't miss work. Someone younger, cheaper or better will take your

In other words, don't get "Wally Pipped." "The word 'Pipped' should be in a dictionary," said Tom Pipp, Wally's 80-year-old son and a Sarasota resident. "It's used a lot."

Though the reason for removal is cause for debate, Wally Pipp is famous for coming out of the New York Yankees' lineup on June 2, 1925.

He was replaced by Lou Gehrig.
We are fortunate to have those who remember these great ballplayers to pass the stories along to today's generations. Lou's story still sets the standard for greatness and the tragedy of ALS. Wally Pipp was an important part of that story.

Web 2.0 or Web Too... Oh, No

The MDA has announced its own social networking site.

Editorial comment from ALSadvocacy -- It's not about the site. It's about the not-for-profit's engagement and energy online. Right now it seems that we have an ALS web presence that is like a city with a lot of run-down, half-empty buildings. Maybe we need some urban renewal with fewer buildings and more energy within each one. Landlords living and working on-site and talking with the tenants are good for any building.

Tuesday, April 21, 2009

Minor League Baseball Is 4 ALS, Too

Nice story...

What started as a joke between friends quickly turned into an opportunity for the Quad Cities River Bandits and the Omaha Royals to raise money for the ALS Association, an official charity partner of Minor League Baseball.
When the dust settled, the eBay auction that featured the autographed Martie Cordaro baseball raised $105. Then each organization matched that sum - bringing the total raised to fight ALS to $315. To top it off, Omaha Royals President Alan Stein and River Bandits Owner Dave Heller each personally matched the donation - bringing the grand total raised to $525 - all to be donated to the ALS Association.
In the process of collecting autographed baseballs for the River Bandits' Autographed Baseball Giveaway Night on May 20 at Modern Woodmen Park, Vice President and General Manager Kirk Goodman sent a request to his friend at the Triple-A Omaha Royals, Vice President and General Manager Martie Cordaro. Goodman asked Cordaro to send him some baseballs signed by Royals Triple-A prospects and future big leaguers. Cordaro complied, but he also included a personally autographed baseball with his name on it.
Continuing the joke, Goodman responded by putting the ball on ebay under the title, "Martie Cordero Autographed Baseball!!!" and touting the exploits of Cordaro, both personally and professionally. After noticing that the auction item was generating an unexpected amount of attention, the two GM's decided that both teams would match the winning bid and donate all of the money to the ALS Association. Not long after, Royals President/CEO Alan Stein and River Bandits Owner Dave Heller also agreed to match the winning bid as a donation to combat
Lou Gehrig's disease.
"When this all started I was just having some
fun, but I'm glad this really took on a life of its own," said Goodman. "Martie has been a great sport and I'm proud to say we have raised so much money for such a great cause."

Shane Victorino is 4 ALS

Shane Victorino, of the Philadelphia Phillies, has won this year’s Lou Gehrig Memorial Award, sponsored by the Phi Delta Theta International Fraternity, headquartered in Oxford, Ohio. The award is presented annually by Phi Delta Theta to the Major League Baseball player who best exemplifies the giving character of Hall of Famer Lou Gehrig, who was a member of the Fraternity’s Columbia University chapter. The award was first presented in 1955 and is permanently maintained at the National Baseball Hall of Fame and Museum in Cooperstown, New York.A team of representatives from Phi Delta Theta and the Philadelphia Chapter of the ALS Association will present the award to Victorino at Citizens Bank Ballpark on July 4th when the Phillies take on the New York Mets at 4:05 PM. The presentation will be a part of “4ALS”, a day celebrated throughout Major League Baseball to honor the 70th anniversary of Gehrig’s “Luckiest Man” speech and to raise awareness for ALS (Amyotrophic Lateral Sclerosis).

Is Your Hobby To Lobby for a Good Cause?

ALS is an important cause, even if it diminishes your career potential with the Obama administration.

From The New York Times --
April 21, 2009
Nonprofit Groups Seeking Exceptions to Lobby Rule

WASHINGTON — When it came time for President Obama to pick a human rights chief, many around him thought Tom Malinowski was the obvious choice.

As the Washington advocacy director for
Human Rights Watch, Mr. Malinowski has fought slaughter in Darfur, repression in Myanmar and torture in the United States. He served in the State Department and on the National Security Council under the last Democratic president. But he had one liability: he was a registered lobbyist.

The fact that Mr. Malinowski lobbied on behalf of genocide victims rather than military contractors, investment firms or pharmaceutical companies made no difference. Mr. Obama’s anti-lobbyist rules do not distinguish between those who advocate for moneyed interests and those who advocate for public interests, and so Mr. Malinowski was ruled out. But in the process, he has become the symbol of a deep discontent among many Democrats over Mr. Obama’s policy.

“It’s an outrage,” said Stephen Rickard, executive director of the Open Society Policy Center, an advocacy organization. “Tom is one of the most effective and dedicated human rights activists in Washington, and you could get 20 people to say that. It’s extremely unfortunate that Tom and people like Tom can’t be brought in to use their talents.”

Did Anyone From An ALS Not-for-Profit Get A Seat At The Table?

How do we get Kareem Dale, Special Assistant to President Obama for Disability Policy, engaged in the ALS cause? In a way, ALS is the ultimate disabling disease.

Monday, April 20, 2009

A Very Famous Face Of Motor Neuron Disease Is Very Ill
He reminds us all that you can have a head full of working brains even without your share of working motor neurons. We pray for his recovery from this crisis.

Also, following has the best explanation of his motor neuron disease that I have found...

ALS Is Covered In Oklahoma, Too

The ALS awareness hawk is making lazy circles in the sky.

Here's hoping the Sooner Senator reads the Norman Transcript so that he might find a way to help an important cause!

More ALS Media Coverage In Philadelphia

It's wonderful that these stories are told in such a fine way...

Sunday, April 19, 2009

Absence Makes The Heart Grow...


That was one of the all-time great Password clues.

Now that you have a clue, it looks like Jane may be becoming involved in the ALS cause...,0,4244934.story

There Is Absolutely No Excuse For Missing An ALS Walk

It's not like you're being asked to climb Mount Everest or anything...

I've been climbing all over the world since I was 18, but Everest was the ultimate challenge. The expedition in 2003 was made not only to achieve that goal, but to raise money for the Motor Neurone Disease Association. My father was just 44 when he died of the disease in 1988, so the charity was close to my heart.

Sgt. Pledger Gave His Life For His Country

By Harold Jackson
Inquirer Opinion Columnist

I had expected the three-volley salute, but still flinched when the soldiers fired their guns. Funerals always put me on edge. Later, as the honor guard stoically removed the flag from the casket, and folded it to present to Bros' daughter, I thought, "How appropriate."

It was fitting that retired Staff Sgt. Homer O. Pledger Jr. be buried with full military honors. After all, his death was service-related, a result of his tour of duty in the Persian Gulf. No, not in this Iraq war; it happened 18 years ago in Operation Desert Storm. Apparently, that's where Bros contracted ALS. How, no one knows.

Let's Hope They're Sleepless In Seattle

The neurologists are meeting in Seattle next week.

prize4life and The ALS Association are on the exhibitor list.  My dream would be for them both to hire a couple of people from the Pike Street Market and throw some fish from booth to booth to attract a crowd.  It takes some marketing and showmanship to show at those meetings... and ALS certainly needs visibility amidst all of the marketing clamor on the show floor.

It's great that they'll be there talking to the doctors who need to understand more about the disease that stinks more than an old  fish.

Saturday, April 18, 2009

Please Put Some ALS Stuff In The Winnebago Before You Leave For DC

During the advocacy conference in DC, you will be very aware of the families of fallen police officers who are meeting in Washington.  They will be clearly badged and beautifully met and escorted, and rightly so.

You will also be aware of the Realtors who are in town.  They will be clearly tagged and and not shy while vying for time with the same legislators you want to see.

Will they be aware of all the ALS advocates there?  Will they know you by looking?  Will they think about Lou Gehrig's Disease when they see you waiting for a traffic light?  ALS was branded wonderfully before the world ever talked about branding.  We need to be visible reminders that Lou Gehrig's Disease still kills.  This isn't just any disease.

Put stickers on your luggage.  Tell the desk clerk about ALS when you check in.  Wear or carry something that says "ALS" when you ride the Metro.  Ask a Realtor if he or she knows what ALS is.  Tell the waiter that you're in town as an advocate for Lou Gehrig's Diseases.  Get the word out. 

Perhaps DAALS Should Mobilize

Daughters Against ALS just might be determined enough to make some things happen.

Rice Celebrates O.J. Brigance's Courage

Great coverage in a great city.

Don't forget all of the NFL alumni with ALS. Coincidence or connection?

Friday, April 17, 2009

Nancy O'Dell Book Tour Will Speak Of ALS And The Spice Cake,,20273278,00.html

She got a mention on ALS in People magazine and we hope that the spice cake recipe starts conversations about ALS on her book tour, too.

Will There Be New Energy In ALS Advocacy And Awareness Online?

So, why are young people practically beating down the White House door looking for jobs?

“It’s the promise of ‘You can do something bigger than yourself.’ The idea that you can be part of something that’s about change,” said Brendan Heyck, a 22-year-old who had worked for the Obama campaign in New Hampshire. “I came down here three days before the inauguration just because I knew D.C. was where I wanted to be,” Heyck said. The recent graduate of the University of Rhode Island is working as an advocate at the ALS Association, a group that champions finding a cure for Lou Gehrig’s disease, or ALS. But Heyck is still hoping he’ll score a spot in the administration – any spot. He’s not holding his breath, though; he also applied for jobs at the Capitol, and he plans on taking the foreign service exam in the next few months. “I’m into doing whatever I can to get my foot in the door,” he said.

Give A Starbucks Card To A Man With ALS

...and while you're at it, please email this one to the health reporters at your local television stations and newspapers.  America loves coffee stories and this will get ALS in the press.

Advocates need to help the press with story ideas from time to time ;-)

Thursday, April 16, 2009

"ALS Across America" Kicks Off

Much is to be learned from all of these courageous people with ALS.

Steve Franks, 50, may have lost the ability to perform many of his tasks at his former job at Mainlands Golf Course in Pinellas Park, Fla., however, that has not stopped him from spearheading plans to transport 150 mannequins across the state in the "Piece by Piece Awareness Campaign." Each mannequin represents a person who ALS has affected and whose body has literally been stolen "piece by piece." "The mission Steve is embarking on this year will be his biggest attempt to focus the public's attention on this devastating disease," said Kamden Kuhn, public relations coordinator for The Association's Florida Chapter.

[Steve's work can be seen at ]

Wednesday, April 15, 2009

Liberté, Egalité, Fraternité and Remembering Lou With Service Projects

There's a nice feature on Lou's fraternity's home page this month --

If You Need Some Traveling Togs For DC...

Black t-shirt will turn heads and get attention. It will be light to pack and easy to rinse in the Winnebago. The price is right. You may want to get a couple.

We seriously need to get some outward signs of the cause on the streets of Washington and in the Halls of Congress.

Kamden Kuhn Gets It When It Comes To Advocacy

Watch the news video.

How Does A Red Sox Fan Get Lou Gehrig's Disease?

From ALSspreadtheword... nice story of a Bosox fan --

Tuesday, April 14, 2009



The new Yankee Stadium is helping keep number 4 alive, and we need number 4 and Lou Gehrig to be alive in people's minds now more than ever.
The facilities may have been massively upgraded from the old building, with Yankees officials now calling their home "a living museum" -- a theme evident from the moment a fan enters Gate 4 at the corner of 161st Street and River Avenue, greeted by a recording of Lou Gehrig's "luckiest man" speech.

This morning's WSJ's last page features some of the wonderful historic photographs that adorn the stadium. Number 4 is very much a part of those photos. Outside of Suite 4 the wall features an historic melange of Lou images.

Thank you, Yankees, for keeping Lou's memory alive. Were it not for him, the disease wouldn't even have a name that anyone could remember.

Lou's number 4 was the first number retired on any team in any sport. 4 ALS says a lot.

Monday, April 13, 2009

Et, Tva, Tre, Fyra

From the April, 2009, issue of the Archives of Neurology --

Conclusions: The incidence of ALS has been increasing during the last 15 years in Sweden. Further studies are warranted to explore the underlying reasons for this observed trend.

Which country will be the first to take this disease seriously enough to figure it out?

The Nobel Prize in Medicine goes to ______________ for figuring out ALS. Who will it be?

Let's Start A Little Friendly Competition

Rumor has it that the MDA will once again run its "Anyone's Life Story" campaign during May where each day has a featured patient with ALS.

Rumor has it that ALSA will once again run its "ALS Across America" campaign during May where each chapter has a featured patient with ALS.

So how about having a little contest to see which organization can place those patient vignettes in the most media outlets? The more the merrier. They don't do nearly as much good running on the organizations' websites and in their house magazines. Let's see who can preach beyond the choir the most and get the word out on television, on radio, in print, on blogs, ... everywhere there are inquiring minds that need to learn about ALS.

Saturday, April 11, 2009

"Queen For A Day" Meets "Dragnet"

ALS organizations are encouraging people with ALS and caregivers to write letters of how ALS has "impacted their lives," so that they may be shared with legislators on Advocacy Day in May.

It's easy to fall into "Queen for a Day" syndrome and tell the story of how ALS is the worst, most miserable, stinking disease ever. It is. That's an important message.

It's also important to tell "just the facts, Ma'am." Legislative asssistants who read these letters need information and data on which to build cases. How many hours of work did a caregiver miss last year trying to help with the needs of a relative with ALS? What was the impact on a child's grades the year after a parent died from ALS? Did a child defer a college opportunity because of caregiving needs of a parent's ALS? What dollar cost did a family face trying to sell a car with an outstanding loan in order to get a used junker wheelchair-accessible van? How many healthcare dollars were wasted with medical tests and doctors' visits before the ALS was correctly diagnosed?

There are countless metrics associated with this disease. As you write down your stories, please think about those dollar-and-cents metrics or those report card scores or the lost opportunities.

There are a lot of miserable situations caused by many diseases in this country. What is it that is unique about ALS that should call our government leaders to action? It strikes without warning and turns lives upside down... but what is the human and financial cost to our society? Just the facts.

Try The Google Test

Every day ALSadvocacy googles "amyotrophic" and then sorts by date.

Every day there are more obituaries than stories of research success (or even research promise).

This week the obituaries included Eliot Disner (a nationally prominent antitrust attorney), Scott LeDoux (a nationally prominent boxer), and Anthony Cardinale (a nationally prominent Marine and DOD educator).

There were also obituaries of many prominent in their families and churches and communities.

How do we make this $%^&^*(@# disease nationally prominent?

Tuesday, April 7, 2009

Damn This Disease. Damn It.

Tom Watson's famous words were spoken five years ago.

His Masters press conference is worth a read --

Are We About To Lose A Powerful Voice?

In this morning's WSJ, there is an article on the dark outlook for the baseball beat writers. Those are the same people who wrote about Curt Schilling and Catfish Hunter and Lou Gehrig. They helped advocacy by simply covering the news of a sport that has been so intertwined with ALS.

An excerpt:

The Wall Street Journal
APRIL 7, 2009
Baseball Writers Brace for the End
As Newspapers Cut Back, Press Boxes Grow Lonelier; How a Venerable Institution Lost Its Way

By Russell Adams and Tim Marchman

Baseball's independent press corps, once the most powerful in American sports, is fading. As newspapers cut budgets and payrolls, the press boxes at major league ballparks are becoming increasingly lonely places, signaling a future when some games may be chronicled only by wire services, house organs and Web writers watching the games on television.

"I certainly recognize where things are going," says Jack O'Connell, secretary of the Baseball Writers Association of America, the venerable 101-year-old membership organization for the profession. "I certainly see the dark clouds."

60 Years Later, Lou Gehrig Continues To Be The Biggest ALS Advocate

...and baseball is the sport that gets the word out about ALS.

Lou Gehrig on home movies... thank heavens that he was caught on film!

Saturday, April 4, 2009

You Will Actually Smile When You File

The fifteen funds participating in California's tax check-off program are: Alzheimer's Disease/Related Disorders Fund, California Breast Cancer Research Fund, California Firefighters' Memorial Fund, California Military Family Relief Fund, California Fund for Senior Citizens, California Peace Officers' Memorial Fund, California Sea Otter Fund, California Seniors Special Fund, California State Children's Trust Fund, Rare and Endangered Species Prevention, Emergency Food Assistance Program, California Ovarian Cancer Research Fund, Municipal Shelter Spay-Neuter Fund, California Cancer Research Fund, and ALS/Lou Gehrig's Disease Research Fund.

I believe that Illinois also has a tax check-off donation option that includes ALS. Anybody else?

Friday, April 3, 2009

Fatal Diseases Are A Bummer...

"Fatal diseases are a bummer, but more importantly, people's responses to fatal diseases make the human race look downright respectable." Professor Steve Gey, Florida State University School of Law

There are several news items about Professor Gey today. Here is one that will raise ALS awareness and awareness of an exceptional and obviously beloved man --

ALS, the bummer of a disease, hits another good, courageous, talented human being. Watch the video. ALS must be stopped.

Wednesday, April 1, 2009

And If You're Taking The Winnebago To Washington

How about putting a nice sign on the back of the Winnebago... "K ALS" or "Cure ALS" or "ALS Stinks" or "Roll Over ALS" or "I'll Bet You Thought Somebody Had Cured ALS By Now" (if you have the really big Winnebago)... ?

If you're flying in, how will people on the plane know that you're on a mission to raise ALS awareness in our nation's capital? A hat or a bag or a sign or a big luggage sticker would work.

When you're walking or wheeling to and fro in Washington, will you have a visible sign of why you're there? Some of those people in the hotel lobby and on street corners may have influence on legislation or medical research. You never know.

We need to make everybody in Washington say, "Boy, it sure seems like there are a lot of people concerned about ALS this week." We can't afford to be just another crowd in Washington. This is about ALS.

Pack Up The Winnebago And Make Tracks To DC

Following is a reminder from the ALS Association regarding Advocacy Day registration:

Have you registered for the 2009 National ALS Advocacy Day and Public Policy Conference May 10-12 in Washington, DC? If you plan to join us in the nation's capital, please register and reserve your hotel room TODAY! The deadline to receive reduced registration and hotel rates is Friday, April 10, just a few days away.

Early Bird Registration Deadline: Friday, April 10
You must register by FRIDAY, APRIL 10 in order to receive the reduced conference registration rate of $125 ($300 for non-affiliates). Fees for registrations submitted after April 10 are $250 for attendees affiliated with The ALS Association, an ALS Association Chapter or other affiliated organization and $600 for non-affiliates.
Conference registration fees are waived for all people with ALS and for a caregiver traveling with them to the conference.
Click here to register:
2009 National ALS Advocacy Day and Public Policy Conference

Hotel Reservation Deadline: Friday, April 10
April 10 is the deadline to reserve a hotel room at the reduced conference rate of $219 + tax/night. After the deadline, this special rate no longer will be available to attendees. Moreover, the hotel no longer will hold rooms specifically for conference attendees and it is possible that, after the deadline, the hotel will not have rooms available during the conference dates or they may be available at much higher rates.
To reserve a hotel room, please contact the hotel directly:
Renaissance Washington, DC Hotel
999 Ninth Street, NW
Washington, DC 20001
Phone: (202)-898-9000

ADA Rooms
The ALS Association has reserved ADA rooms at several different hotels in Washington, DC to help ensure that all PALS who want to attend the conference have access to ADA accessible accommodations. If you or your chapter wish to request an ADA hotel room, please contact Mary Wisniewski, event planner for The ALS Association's 2009 National ALS Advocacy Day and Public Policy Conference. She can be reached at or by phone, (202) 746-0043.
Please do not contact the hotel to request an ADA room as the hotel will not be able to guarantee your request.

Philanthropy, Meet Venture Capital

Here is the website for the new MDA enterprise --

It's a 501(c)3 organization that will invest as a venture partner in targeted research areas.

This should spur some interesting conversations and articles on business pages. Is it really philanthropy when you want a piece of the action? Is there any other practical way to attract necessary large sums to certain diseases? Will the businesslike approach help make donated research funds be used more efficiently? Does a piece of the action taint the charity? Will this raise the level of funding to a level that will find cures quickly? Can such venture capital complement government-funded research? Can philanthropy and venture capital coexist? Can a successful investment in one therapy fund more successful investments in others?

It's a good time for the public and for journalists to look at and understand the business model and ask their questions and figure out if this is the answer. What we've been doing for the last 140 years has certainly not been the answer.