ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, January 31, 2009

Move Over, Coaches. There Will Be A VIP On The Superbowl Sidelines Tomorrow.

http://www.ky3.com/sports/localheadlines/38728137.html

OZARK, Mo. -- Thanks to his NFL-playing cousin, an Ozark resident who suffers from Lou Gehrig's disease is getting the opportunity of a lifetime. "He's been battling with pneumonia so that's been our only concern," said Heather Cook. Those words from Heather Cook about her husband, Alfonzo, sound a bit scary. But not even pneumonia will keep them from leaving the cold of Missouri for sunny Florida. That's where Cook's cousin, Tampa Bay safety Jermain Phillips, got them sideline passes for the Super Bowl.

Heather says there was really only one thing to consider. "We had to make sure everything was wheelchair accessable." That's because Alfonzo suffers from ALS, the fatal neuromuscular illness that claims 90 percent of its victims within 10 years.

Cook, a former college football player at Mid-America Nazarene, was diagnosed two years ago.
Nice cousin!

New York Times Reviews Paulson Book

And they say it's a "must-read."

http://www.nytimes.com/2009/02/01/nyregion/thecity/01read.html?ref=thecity

Robert E. Paulson’s “Not in Kansas Anymore: A Memoir of the Farm, New York City and Life with A.L.S.” (Gemma B. Publishing, $19.95) is an inspirational must-read record of one man’s indomitability with the support of his wife, his family and his friends.
...
But he lived and wrote this memoir on an eye-responsive computer keyboard. The “diagnosis of this disease need not be a death sentence,” he concludes, adding: “Life is everything. And what is it but the ability to feel, think and communicate? Thanks to today’s technologies, A.L.S. can’t take any of these from you.”

Echoing Gehrig, Mr. Paulson, who is 71, writes: “I am a lucky man.”

Friday, January 30, 2009

Now You Know What It's Like To Get Motor Neuron Disease (ALS)

http://www.sarahsstory.org.uk/

Take a deep breath and click on the video and watch. It all happens fast.

It should be required viewing for everyone who does not have ALS. Pass it on.

Thursday, January 29, 2009

Do You Think We Can Get An Appointment For Advocacy Day???

Once again, it's a small world, and a Jill Biden staffer certainly understands ALS.

From the change.gov newsroom...

Anthony Bernal, Director of Scheduling for Dr. Jill Biden

Anthony Bernal serves as director of scheduling to Dr. Jill Biden on the transition team, a position he held during the Obama-Biden campaign. Bernal began his professional experience at the White House serving both President Bill Clinton and Vice-President Al Gore in their respective offices of scheduling and advance. Following the 2000 election, Bernal joined the Coca-Cola Company’s office of international affairs in Washington, DC and then AARP. In 2004, Bernal served as Director of Financial Administration of the Democratic National Convention Committee, Inc. Following the 2004 DNC Convention, Bernal was chief of staff at the ALS Therapy Development Foundation, a Cambridge-based non-profit biotechnology company.
Bernal, a native of Tucson, Arizona, earned his Bachelor’s Degree in History and Philosophy from the University of Texas at El Paso and studied at Carleton College in Northfield, MN.

Rugby Player Puts The Boots To ALS

http://www.kcblues.org/s/665/images/editor_documents/PUTTING%20THE%20BOOTS%20TO%20ALS.pdf

...and he has Secretary Daschle's email address ;-)

It's A Small World, After All

This weekend Jerry Lewis, celebrity spokesperson for the MDA (which has an ALS Division), is appearing at the French Lick Resort
http://www.frenchlick.com/entertainment/entertainment.asp

A native of French Lick, Georgia Bird, died from ALS in 1996. You may be familiar with her son, "The Hick from French Lick," Larry Bird.

If only the topic might come up this weekend and some visibility might come to the ALS cause via a famous entertainer and a legendary athlete who knows ALS all too well.

It's Time To Speak Up

From the Washington Post
http://www.washingtonpost.com/wp-dyn/content/article/2008/12/08/AR2008120803798_pf.html
A Lobbying Frenzy For Federal Funds

By Annys Shin
Washington Post Staff Writer
Tuesday, December 9, 2008; A04

Last week it was auto industry suppliers. Yesterday it was mayors from the nation's biggest cities. Now, auto dealers from across the country have arrived in Washington.

With Congress poised to vote on a rescue for the nation's auto industry and President-elect Barack Obama promising to launch a massive public spending program, Capitol Hill has once again become the scene of a lobbying free-for-all, with industry and local governments alike seeking some of the billions in taxpayer dollars that Congress is likely to spend in the not-too-distant future.

While some of the lobbying has been conducted by the usual hands on K Street, a parade of trade groups, unions and business owners have chosen to voice their pleas in person.

___________

Please take a moment today and email your two Senators and your Congressperson to remind them that the little guy needs relatively modest funding for the ALS Registry Act so that some registering can commence. What does it profit our nation if we bail out banks and industries if their employees and retirees are subject to a mysterious, difficult, and expensive death from ALS? Perhaps there is a good job at the CDC that we need as part of this stimulus to simply implement the ALS Registry that was authorized last year. If we wait until May, there may not be any funds left after the lobbyists take care of their clients.

You can find your legislators by using the Thank You tool at
http://capwiz.com/alsa/home/

Simply change the text to ask in your own words that they listen to some important voices amidst the lobbyists' din over stimulus funds and help in implementing the ALS Registry.

Remember When You Simply Got An Education and a Good Home Loan After Serving Our Country?

Instead of the GI Bill and VA loans, you can now be eligible for the disease that nobody wants or deserves.

ALS is a crummy fringe benefit of military service.

We need to make this problem register with people. It should concern and outrage us all that more isn't being done to figure out the connection. In the meantime, veterans and their widows and widowers struggle.


From the Washington Times (January 29, 2009)
http://www.washingtontimes.com/news/2009/jan/29/how-als-listing-affects-benefits/print/

Sgt. Shaft: How ALS listing affects benefits
Sgt. Shaft
Sgt. Shaft: My husband was a Vietnam vet, 1st Infantry, and died from amyotrophic lateral sclerosis (ALS) on May 22, 2004. I understand the VA has listed ALS as a presumptively compensable illness, meaning there may be an association between it and military service. Are there any benefits I can collect? I am collecting Dependency and Indemnity Compensation (DIC) right now, as he was receiving 30 percent disability because of diabetes and that was listed on his death certificate as a secondary cause of death. He should have been classified as 100 percent disabled because of the ALS. Would I be entitled to anything other than what I receive now?

Thanks,

Rose Y, via the Internet


Dear Rose:

Those in the know at the Department of Veterans affairs tell me that DIC will continue to be your primary benefit. You will not be eligible for any retroactive and/or increased monetary benefits based on the ALS disability. However, you may be eligible for two additional benefits because of ALS now being considered a presumptive disease.

• Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA) is a comprehensive health care program in which the VA shares the cost of covered health care services and supplies with eligible beneficiaries.

• Survivors' and Dependents' Educational Assistance Program (DEA) provides education and training opportunities to eligible dependents of certain veterans. The program offers up to 45 months of education benefits. These benefits may be used for degree and certificate programs, apprenticeship and on-the-job training. If you are a spouse, you may take a correspondence course. Remedial, deficiency and refresher courses may be approved under certain circumstances.

To apply for these benefits, you should contact your nearest VA regional office or call the VA telephone number, 800/827-1000.

Tuesday, January 27, 2009

Another Athlete Has ALS - Scott LeDoux

http://www.timesoftheinternet.com/40911.html

During his career, LeDoux fought heavyweight champions Muhammad Ali, George
Foreman, Ken Norton and Leon Spinks, and sparred with Mike Tyson and Lennox
Lewis.


Hmmmm... Ezzard Charles... Italian soccer players... NFL players...

It makes you want to scratch your head (but not too hard).

Monday, January 26, 2009

ALS Piece-by-Piece Campaign Continues To Attract Media Attention

http://www.youtube.com/watch?v=xtTD69BuwgY&feature=channel_page

...and the display will be up in the city hosting the Superbowl this weekend...

ALSA National Board Member / Journalist Jinah Kim Receives Award from ALSA

From The Daily Bruin
http://www.dailybruin.ucla.edu/news/2009/jan/26/alumna-awarded-stories-deadly-illness/

Kim received the Voice of Courage Award from The ALS Association on Saturday. The award is given to those who significantly contribute to expanding the public’s awareness of amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, said Jeff Snyder, the vice president of communications for The ALS Association. “Jinah Kim received the award for the comprehensive nature of the stories that she has done about ALS for over the years,” he said. Snyder said it is essential for the public to know about the disease and to increase funding for research. He added that only through research can this disease be figured out and a cure can be found.


http://en.wikipedia.org/wiki/Jinah_Kim

Google jinah kim als to see stories.

Nice story here... http://www.youtube.com/watch?v=o--I3M1Mgs8

Sunday, January 25, 2009

Where is our WherewithALS???

The ALS Registry Act was passed on September 23, 2008.

The 2009 ALS Advocacy Day on Capitol Hill is scheduled for May 12, 2009, 232 days after the passage of the ALS Registry Act.

Based on the conservative estimates of 15 American ALS deaths per day, almost 3500 people with ALS will have died between passage of the Act and the anticipated blitz on legislators. Their clues are lost since the ALS Registry has not been funded yet. Unfortunately there will be at least 3500 new families had no clue about ALS on that day in Septmber and are now living the nightmare.

Fortunately with today's technology, we can get our message out to our legislators without waiting for May.

There are 108 days from today until Advocacy Day in May. That's over 1600 funerals and 1600 new recruits. The relentless clock continues to click. We have a fresh administration and a fresh 111th Congress. Don't hesitate to be heard now.

Our government has authorization to collect the dots with that Act that was passed in September. Now we need the wherewithal to just do it... or maybe we should call it the wherewithALS.

PALS Featured in Philadelphia Inquirer

http://www.philly.com/inquirer/sports/high_school/20090125_Marc_Narducci__Referee_won_t_let_ALS_slow_down_his_lifestyle.html

Besides working a full-time job for Bristol-Meyers Squibb in Lawrenceville,
where this former welder now plans schedules for the mechanics and supervises
their work, Schultz says he also still officiates about 70 basketball games a
year.


Here's hoping that Mr. Narducci's employer understands more about ALS because of his courage and then decides to invest in finding the cure.

Saturday, January 24, 2009

We Can't Afford To Be Left Standing At The Station...

as the train loaded with $timulus$ dollars pulls away.

Today major corporations have initiated large-scale letter-writing campaigns to get their employees to pitch the case for helping them survive and create job growth.

Today labor unions are telling members of the 111th Congress how important it is to spend funds to maintain good American jobs.

Today special interest groups are getting the attention of the new administration so that they might be a part of the economic recovery packages.

It seems terribly wasteful for those with a vested interest in finding a cure for ALS to be silent while billions are spent on the recovery packages... so... I encourage you to take a quick minute and let President Obama and Vice President Biden know about ALS. Here is the contact form:
http://www.whitehouse.gov/contact/

Some things that might be worth mentioning --
  • There is still no known cause nor a cure for ALS.
  • The ALS Registry Act was passed, but without some money, nobody will actually do the work authorized by the ALS Registry Act. Nobody is counting noses. This is the information age, and we're not keeping basic information about ALS cases. You can't connect the dots until somebody starts collecting the dots.
  • People die from ALS. It's a nasty disease.
If any or all of those three points could be seared into the minds of the President and Vice President, that would be helpful. They have a lot of people grasping for their attention. We can't afford to be silent and forgotten.

In five minutes you can write a dynamite note on that contact form and let them know that there is a big change that we need in America, and that is to put an end to ALS.

ALS and World Peace

http://www.missnc.org/about.html

It's Miss America weekend. Here's hoping that she makes it to the final round where they talk about their favorite causes. Or better yet, here's hoping that she wins and talks about ALS throughout the country for a year.

Lou Who?

From the New York Times this morning --
Bill Werber, Infielder Who Played With Ruth, Is Dead at 100

Bill Werber, a link to the Yankees of Babe Ruth and Lou Gehrig, the leadoff hitter in the first major league baseball game to be televised and the oldest living former big leaguer, died Thursday in Charlotte, N.C. He was 100.
As we lose our living links to the man who gave ALS a name that people could finally remember, we need to make a concerted effort to keep Lou Gehrig's memory alive. If we don't, a generation who never knew anyone who saw him play will think that he was just another athlete who got sick a long time ago.

Perhaps it's time for a Lou Gehrig History Project that would include pre-built lessons for schools, essay contests, revivals of Pride of the Yankees, tie-ins with Little League Baseball, promotion of Gehrig biographies, ...

This is a crucial moment to prevent generations from losing an understanding of Lou and the tragedy (and travesty) of ALS.

Wednesday, January 21, 2009

Another ALS Advocate Dies

From the Pittsburgh Post-Gazette --
http://www.post-gazette.com/pg/09021/943407-100.stm

PG reporter who became ALS activist dies
Wednesday, January 21, 2009
Pittsburgh Post-Gazette
Monessa Tinsley-Crabb, a Post-Gazette reporter who detailed her struggles with Lou Gehrig's disease in a series of newspaper columns, died today.

Mrs. Tinsley-Crabb, 55, of Carnegie, held several posts since joining the PG in June 2000, including police reporter and, most recently, as a reporter for the East edition.

After experiencing health problems, Mrs. Tinsley-Crabb was finally diagnosed in 2007 with amyotrophic lateral sclerosis, known as Lou Gehrig's disease.

A former teacher who became a journalist, she decided to write about the disease and got involved in lobbying for state funding for ALS research and patient services, including making a trip to Harrisburg.

More details in tomorrow's Pittsburgh Post-Gazette.

Tuesday, January 20, 2009

Mike Lopresti in USAToday on Nick Scandone

http://www.usatoday.com/sports/columnist/lopresti/2009-01-20-scandone-obit_N.htm

In China, he did it. He forced a compromise from one of the deadliest afflictions on Earth. He bought just enough time.

Could there have been a more heartfelt victory anywhere in 2008? How?

Saturday, January 17, 2009

Watch The Coin Toss!

http://www.wbaltv.com/sports/18496237/detail.html

The Ravens’ director of player development, O.J. Brigance, who is battling Lou Gehrig’s disease, has been an inspiration to the entire Ravens organization this season. Brigance, who played seven years at linebacker in the NFL, including two seasons in Baltimore (2000-01), has earned numerous honors from the NFL for his player development program, including the league’s Best Overall Player Development Program, the Most Outstanding Internship Program and Outstanding Continuing Education Program. The Ed Block Courage Award Foundation recognized Brigance with its Johnny Unitas Tops in Courage Award last March. Brigance, who was awarded the game ball after the Divisional Playoff victory in Tennessee, will be escorted in a wheelchair to mid-field on Sunday.

Game time is 6:30 pm EST on Sunday. It's on CBS. Be there or be square.

Friday, January 16, 2009

Seize The Moment - NFL Football Is On People's Minds

20 of the top 25 searches that found this site yesterday involved "Eric Scoggins" or "O.J. Brigance."

If you have any media connections, now is the time to plant the seeds for some ALS-football stories.

Now is also the time to keep the buzz up with your friends and family. In a month, football will be old news. Today it's a way to get the word out about ALS. The Washington Post feature was terrific yesterday. It's easy to forward:-)

Thursday, January 15, 2009

All Eyes Are On The Sunshine State

Moving video from Channel 10 in Tampa

Eric Scoggins, Another NFL Veteran, Dies From ALS

From the AP --

Former USC LB, NFL linebacker Eric Scoggins dies
The Associated Press
Wednesday, January 14, 2009

LOS ANGELES: Eric Scoggins, an outside linebacker who helped Southern California beat Alabama in their big 1978 matchup, has died of Lou Gehrig's disease. He was 49.

Scoggins died Friday in Tracy, Calif., the school said Tuesday.

Scoggins played three games for the San Francisco 49ers in 1982, then spent time in the United States Football League with the Los Angeles Express and Houston Gamblers.

He was a four-year letterman at USC. He recorded 164 career tackles, including 11 as a sophomore in the 24-14 win at Alabama. That performance earned him the Pac-10 defensive player of the week award.

Advertising Age Speaks Of ALS

http://adage.com/adages/post?article_id=133713

The comment posted there speaks volumes --
Yea, definitely creepy. But, you know, it got my attention, which is tough these days. And it's probably going to stay with me awhile. So...kudos. – Julie Havarty Tampa, FL

O.J. Brigance Featured in WASHINGTON POST!

There is a wonderful feature in the Washington Post about O.J. Brigance. We see his picture getting the game ball last week.

http://www.washingtonpost.com/wp-dyn/content/article/2009/01/14/AR2009011403389.html?hpid=topnews

If you're planning on a trek to Advocacy Day in Washington in May, you might want to print a copy of this and remind the legislators you meet with about the football player they read about in January.

They may not always agree with it, but you can bet that legislators and staff members in Washington read the Post. Today's issue has taught them much about ALS. Thank you O.J. Brigance and Ravens!

Tuesday, January 13, 2009

Call To Action - Get the O.J. Brigance Story To Local Media

It's remarkably easy to find email addresses for sports reporters on local television station and newspaper websites. They are usually on the staff bio pages or at the ends of articles (and not on the "contact us" page).

In a few minutes you can send short, personal messages to reporters pointing out the O.J. Brigance story in the Baltimore Sun (item below) and hoping that it might tweak a story for them during this intense pro football season. The story just might strike a chord, especially if it's a slow sports week;-)

It can't hurt, and this story has a huge reach to get information about ALS to people in very meaningful way. Also, as p.r. professionals say, this story in the midst of the playoffs has a shelf life of a couple weeks. We need to act now to get it out.

O.J. Brigance Continues to Inspire Ravens and Us All

From the Baltimore Sun

http://www.baltimoresun.com/sports/bal-te.sp.brigance13jan13,0,7849441.story

The person considered the strongest Raven by coach John Harbaugh received the game ball after Saturday's AFC divisional playoff victory over the Tennessee Titans in Nashville, even though he didn't take a snap or put on a uniform.

In the victorious locker room at LP Field, Pro Bowl safety
Ed Reed handed the ball to O.J.Brigance, the Ravens' director of player development, saying, "This is for you."

Brigance expressed thanks from the motorized wheelchair that he uses as he battles
Lou Gehrig's disease, then added, "but we've got two more to
play."

Saturday, January 10, 2009

What A Difference A Few Years Makes


2001 - Number 57 and Ravens crush Titans.

2007 - Number 57 has ALS.
2009 - They just announced on the post-game show on CBS that O.J. Brigance was presented with today's game ball after the Ravens squeaked past the Titans in a hard fought upset. Shannon Sharpe spoke of his former teammate with Lou Gehrig's Disease to a national audience.

From the Herald Tribune in Sarasota

Another writer uses his talent to explain a few things to us about life...

By Rich Brooks
http://www.heraldtribune.com/article/20090110/COLUMNIST/901100368/-1/NEWSSITEMAP

Let's allow ourselves a moment of optimism
Published: Saturday, January
10, 2009 at 1:00 a.m. Last Modified: Friday, January 9, 2009 at 11:50 p.m.

Get my soapbox because it's time for some encouragement from moi.

Most people don't read newspapers for encouragement. No. They read for the news,
which is defined as whatever the editor says it is. I get that. And I get that newspapers aren't the preferred reading of any Optimist club. Lately, though, the news is filled with even more gloom than usual. With the economy in a tailspin, and layoffs and cutbacks affecting just about everyone, it's time to search your soul and find some deeper meaning to all this chaos.'

Like many soul-searching probes, start with a question: Who are you?
A dedicated father or mother? Someone dedicated to your job? Someone who volunteers in the community? Now ask yourself this: What if something happened to you, or your job? Would you be the same person?

I have been through this and I've changed. Not all changes were for the better and I'd be a liar to say otherwise. Since getting an ALS diagnosis about 13 years ago, in man ways I am but a shadow of my former self.

Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease, takes no prisoners and won't compromise. Roughly 80 percent of patients die within five years of diagnosis. The disease kills the neurons that connect the brain with muscles. Those with it become paralyzed and die of asphyxiation when their diaphragms don't work. There is no effective treatment and no known
cure.

I once enjoyed golf and tennis to the point of obsession. I played golf and even liked to daydream about the rare rounds of 80 or lower.

My epiphany came while driving home from working late one night at the Herald-Tribune. Something struck the rear window of the Plymouth Volare I was driving, shattering the glass. But all I could think of was the lousy round of golf I had played earlier that day. Imagine being more upset about golf than a shattered window. That's how obsessed I had become. And now, I'm haunted by those memories as I have dreams about tennis, but nightmares about golf.

Getting back to my original question, though: Who are you? Are you your stock portfolio? Are you your job? I don't think so. Human beings are so much more. We have souls and heart and minds that create and think and evaluate. Those of you who have lived through the Great Depression have weathered much worse in the way of financial catastrophes.
We've been through worse crises. And we'll survive this one, too.

Friday, January 9, 2009

Ravens vs. Titans vs. ALS

Saturday, 4:10 pm EST.

Ravens are the underdogs.

So is O. J. Brigance.

Go, Ravens, beat Titans and ALS, too.

ALScounts Is Back

ALScounts is writing again about the need for an ALS Registry.

www.alscounts.com/slog.html

Right now we're authorized but not actually counting any noses or capturing data. Talk and authorizations are cheap. We need a deliverable.

Wednesday, January 7, 2009

To Catch A Thief

http://www.tampabay.com/news/humaninterest/article960609.ece

There Is A Thief In Our Midst

www.stealingpieces.org

What a stunning (literally) website to help wake up the public to ALS.

ALS Registry - Yo, Secretary-elect Daschle, Over Here!

How do we get HHS Secretary-elect Daschle to see the economic and humanitarian common sense to funding the ALS Registry that was authorized by the ALS Registry Act?

It appears that there is a huge healthcare money pie being divided up now...
http://www.politico.com/news/stories/0109/17119.html

How do we get Mr. Daschle's attention that we have a public health crisis that can't wait?

Getting authorization for an ALS Registry sure felt good, but authorization without stepping up to the plate with funding doesn't do anything but make those of us who are healthy feel good.

Monday, January 5, 2009

"Promising" Breakthrough Makes Time Magazine List

http://www.time.com/time/specials/2008/top10/article/0,30583,1855948_1863993_1863997,00.html

Now if only medical science can traverse the chasm between "promising" and "treatment." This is great for advocacy if it causes momentum to gather and more news about ALS in Time.

Saturday, January 3, 2009

Conversation Starter - "What's That Lapel Pin That The Broadcasters Are Wearing?"

http://sportsontheair.blogspot.com/2008/10/reader-question-what-is-lapel-pin-fox.html

Wouldn't it be a good conversation starter if every network anchor wore an ALS lapel pin on July 4?

Fire Up The TV - CBS, 1 PM EST, Sunday, January 4 - Ravens vs. Dolphins vs. ALS

Spread the word...
http://alsspreadtheword.blogspot.com/

If your city has a CBS affiliate, O.J. Brigance might make a nice feature on your local news, too. They might need a tip to that effect.