ALS Advocacy

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

Wednesday, December 30, 2009

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?

Tuesday, December 22, 2009

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?

Friday, December 11, 2009

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!

Friday, December 4, 2009

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.

Thursday, November 26, 2009

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

Thursday, November 19, 2009

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

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

Wednesday, November 11, 2009

As We Honor Our Nation's Veterans Today










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


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

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

Sunday, November 8, 2009

It's Time To Write Some Thank You Letters

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

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.

Tuesday, November 3, 2009

Gonna Sit Right Down And Write Myself A Letter

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

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:


In Memory of Michael Goldsmith, Baseball Fan and ALS Activist

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

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

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

Major League Baseball has never taken comprehensive action against ALS. Defeating ALS will require the same type of determination, dedication and drive that Gehrig and Cal Ripken demonstrated when they set superhuman records for consecutive games played. With this in mind, why not make July 4, 2009, ALS-Lou Gehrig Day? Dedicate this grim anniversary to funding research for a cure; every major- and minor-league stadium might project the video of Gehrig's farewell, and teams, players and fans could contribute to this cause.

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

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

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

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



Monday, November 2, 2009

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



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


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


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


Michael Goldsmith hit one out of the park.


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


A Hero Has Died

Michael Goldsmith died yesterday.

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

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

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


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



Tuesday, October 20, 2009

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

Thursday, October 15, 2009

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.

Monday, October 12, 2009

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.

Thursday, October 8, 2009

"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!

Monday, October 5, 2009

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

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.

Thursday, October 1, 2009

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

Wednesday, September 30, 2009

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


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

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

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

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

Friday, September 18, 2009

People In Greensburg, IN, Get ALS Awareness



Minear's Department Store rocks!

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

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

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

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

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

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



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

Tuesday, September 15, 2009

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

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

September 15, 2009

For Speech-Impaired, Insurance Fights Remedy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Monday, September 14, 2009

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

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

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

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

The due date for delegate applications is October 15.

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

Please spread the word.

Saturday, September 12, 2009

Derek Jeter Helps Us Remember The Greatness Of Lou Gehrig

He broke Lou's franchise hit record tonight.

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

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

Friday, September 11, 2009

Michael Goldsmith, Cornellian and Our Hero

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

http://cornellsun.com/node/37934

God bless Michael Goldsmith.

Whence All The Website Traffic Here Today?


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


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


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



Thanks for all who are helping to spread the word!

Wednesday, September 9, 2009

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

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

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



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

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

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

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

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

How to get started?

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



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

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

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

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

Thursday, September 3, 2009

Maybe A Rest Will Do Me Some Good

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




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

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

September 4, 2009


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, September 2, 2009

Where Were You One Year Ago?

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

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

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

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

Monday, August 24, 2009

We Need Paul Harvey

...to tell us the rest of this story!

This story was picked up in a lot of tweets this afternoon --

http://www.rapidcityjournal.com/articles/2009/08/24/news/top/doc4a92c91d18d5b559829956.txt

1,200 veterans wrongly told they have ALS
By The Associated Press

CHARLESTON, W.Va. -- At least 1,200 Gulf War veterans across the country have been mistakenly notified by the Veterans Administration that they suffer from a fatal neurological disease.

National Gulf War Resources Center Vice President Denise Nichols says panicked veterans from Alabama, Florida, Kansas, North Carolina, West Virginia and Wyoming have contacted her group.

The letters dated Aug. 12 were intended to notify veterans who have amyotrophic lateral sclerosis, or Lou Gehrig's disease, of disability compensation benefits available to them.

Calls to the VA were not immediately returned Monday.

Nichols said the VA is blaming a coding error for the mistake.

ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles.



Perhaps this horrible mistake will get raise the awareness of how difficult it is to have faith that ALS is identified correctly in medical and death records as G12.2. It should.

VA folks might want to hang out at alsspreadtheword.blogspot.com...
http://alsspreadtheword.blogspot.com/2009/08/can-you-find-als.html

Let's hope this story hits a lot of news outlets and turns into an tsunami of awareness as big as the tsunami of terror that hit those veterans and their families.

Thursday, August 13, 2009

Might We Actually Be Seeing Some Common-Sense Healthcare Reform That Works for ALS?

http://www.galesburg.com/news/news_state/x2145959428/Gov-Quin-signs-spousal-caregivers-bill-into-law

Gov. Quinn signs spousal caregivers bill into law


GateHouse News Service
Posted Aug 13, 2009 @ 09:00 PM
Last update Aug 13, 2009 @ 09:02 PM

SPRINGFIELD, Ill. —

A new state law inspired by two Peoria-area families will set up a pilot program allowing a limited number of people to get paid for providing full-time care to their disabled spouses.

Gov. Pat Quinn's decision to sign the proposal Thursday came as welcome news to Kathi Kupferschmid, an East Peoria resident who is constant caregiver to her husband, Dennis. He has amyotrophic lateral sclerosis, or Lou Gehrig's disease, and it has robbed him of the ability to move anything except his eyelids.

"I might be doing some cartwheels later, if I can find the energy," she said in a phone interview Thursday evening. "I think it's wonderful. It was a long haul."

The Kupferschmids and another couple, Stefanie and Bryan Eklund of Knoxville, face similar situations that came to the attention of Sen. David Koehler, D-Peoria, and Rep. Donald Moffitt, R-Gilson, years ago.

The wives care full-time for their seriously disabled husbands, but neither woman is eligible for the Medicaid payments that would be given to an outside caregiver.

Koehler and Moffitt thought that was unfair, so they sought to change state law. Their effort last year fell short, but the 2009 version of their "spousal caregiver" proposal reached the governor's desk.

With Quinn's signature, House Bill 39 became law immediately.

The pilot project, to be overseen by the Illinois Department of Public Health's home services program, will allow spousal caregiver payments to a maximum of 100 families. Depending on the results, the pilot project eventually could get expanded.

"It's important because there are people that are in situations where they have no other means of supporting themselves and their families," because they're always attending to the needs of a seriously disabled spouse, Koehler said.


Let's hope this pilot is a success and that a former Illinois resident who is now living in Washington is watching a simple concept that delivers better patient care.

Wednesday, August 12, 2009

This Is Advocacy

...simply at its best.

Strong, clear, respectful, effective... please listen to Eunice Kennedy Shriver's message at http://www.eunicekennedyshriver.org/

Tuesday, August 11, 2009

And Now You Know The Rest Of The Vinci Glove Story

http://www.richmondbizsense.com/2009/08/11/local-glove-company-swings-into-the-major/

When Atlanta Brave Vladimir Núñez stepped to the plate last summer, it was the closest Pete Vinci had ever been to the majors.

His father, Benjamin, owned a vacuum cleaner shop and tried to get his son to learn the family business, but Pete was more concerned with playing pro ball.

Vinci started playing Little League at the age of 5 when he was growing up in Westchester County, NY. But Vinci’s contribution to America’s pastime wasn’t destined to be as a player.

He turned down an invitation to train with the Kansas City Royals because his father was diagnosed with Lou Gehrig’s disease. Vinci spent the next years caring for his father.

While he was out of the game, his preoccupation with the sport didn’t die down. Vinci spent his extra hours designing baseball gloves...

This is Advocacy

http://www.eunicekennedyshriver.org/

Sunday, August 9, 2009

Rick Smith, Dear Abby, Rev. Fred Campbell -- The Ultimate ALS Advocates

Perhaps there's a lesson here that we all must do better to educate America about ALS in the military and the benefits veterans and their families have earned.

http://www.gosanangelo.com/news/2009/aug/08/dear-abby-thanks-for-helping-veterans/

RICK SMITH: Dear Abby: Thanks for helping veterans
By Rick Smith Saturday, August 8, 2009

Be careful what you wish for.
When the Rev. Fred Campbell started looking for a way to get the word out about new monthly benefits for the widows of veterans who died of Lou Gehrig’s disease ALS — Amyotrophic Lateral Sclerosis), he went to an old friend. “Dear Abby” had helped the 87-year-old San Angelo resident once before, in 2001, when she printed his letter alerting former prisoners of war and their widows to special veterans’ benefits.

On July 18 of this year, she printed his information about the ALS benefits.
“I’m pleased to help you and America’s veterans once again,” she wrote in her column, listing Fred’s mailing address and e-mail. Fred had also offered to have his phone number published, but Abby’s office told him that wouldn’t be a good idea.He found out why a few days letter when the mail started coming.

“Boy, I tell you,” Fred told me, his voice trailing off. His letter appeared in Abby’s column on a Saturday.“By the following Wednesday I already had 1,000 e-mails,” he said.Since then, he’s received another 1,500 e-mails and 400 letters. (When I called Fred on Thursday, he was answering 15 letters delivered that day.)

While he has help answering his e-mail, he takes pride in personally helping as many individuals as he can. “So many people don’t know anything about this benefit,” he said. After his letter was published July 18, Fred realized he had left out a toll-free number so people could call the Department
of Veterans Affairs for help.

He wrote Abby again asking if the number could be published. She called him. “I asked, ‘Are you really Abby?’” Fred told me, laughing. She was. Jeanne Phillips’ mother, Pauline Phillips, created the column in the 1950s. Abigail Van Buren was the pen name her mother picked. The daughter, in turn, continued using “Abby” when she began writing the column in 1987.

She told Fred she will include the 800 number in her Aug. 20 column. Fred figures Abby’s column has helped get the word about the spouses’ benefits to about 5,000 people in all. One woman he talked to was about to lose her home. The additional income will hopefully help her keep it. “Stories like hers keep me going,” Fred told me. He thinks they might help keep “Dear Abby” going, too. “I’m going to write another letter to Abby and tell her about how she helped that woman. About all the people she’s helped.”

For more information, write Fred at 3312 Chatterton Drive, San
Angelo, TX 76904, or call the VA’s regional office, 800-827-1000.