Tuesday, August 11, 2009
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.
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.
Thursday, August 6, 2009
ALS Association Calls U.S. Citizens To Action
Following is from the ALS Association, Washington, DC, office:
ALS Registry Action Alert and Update
As Members of Congress head home for the month-long August recess, we need your help to increase funding for the national ALS registry.
The ALS Association secured a major victory last week as the Senate Appropriations Committee passed legislation that would provide $7,000,000 for the ALS registry! This represents a 40% increase in funding over last year and is a tremendous accomplishment considering the current economic climate and the fact that most other health programs were cut, eliminated or did not receive any increase in funding.
However, several more steps remain in the legislative process before this funding becomes law. Therefore, we need your help over the August recess to deliver a loud and clear message to your Senators: help find a treatment and cure for Lou Gehrig's Disease by voting for the FY 2010 Labor/Health and Human Services Appropriations Act, which would provide $7 million for the national ALS registry.
Please contact your Senators TODAY. Go to the Advocacy Action Center of our website, http://capwiz.com/alsa/utr/1/DMXCLAYPRJ/DNOULBDFCV/3754152771, to send a letter to your Senators and help make a difference in the fight for a treatment and cure.
Support Health CURE Reform
It's absolutely critical that you contact your Senators this August. Over the recess, much of what they hear will focus on "health care reform" and expanding coverage to the uninsured. While these are important topics in which The ALS Association is engaged, we must make sure Congress does not forget about the un-cured: people living with ALS who have no effective treatment available. We need Congress to direct attention to health CURE reform, not simply health care reform. After all, people with ALS need a treatment and cure as soon as possible and the ALS registry is a vital tool that can help us reach this goal. So please Contact your Senators TODAY!!
CDC Makes Progress in Building the ALS Registry
The ALS Association continues to partner with the Centers for Disease Control and Prevention as the Agency builds the national ALS registry. We are pleased to report that significant progress has been achieved as the registry pilot projects that were underway over the past several years are now complete. The Agency now is moving forward with the exciting next steps that include the pending launch of an online web portal, which will allow every person with ALS in the United States to easily enroll in the national ALS registry. A more detailed update on the ALS registry can be found here.
Enrolling in the Registry
Although enrollment in the ALS registry has not yet begun, The ALS Association is working with the CDC to ensure that as many people with ALS as possible enroll in the registry once it is formally launched. Therefore, we urge all PALS to sign-up as ALS Advocates via our website here: http://capwiz.com/alsa/utr/1/DMXCLAYPRJ/LPXELBDFCX/3754152771. By selecting ALS registry when signing-up, PALS will be notified as soon as the registry becomes operational and they also will receive detailed instructions on how they can enroll.
In the meantime, please make sure to contact your Senators. The future of the ALS registry depends on Congressional funding. And that funding is only possible if you contact your Senators and let them know that people with ALS don't have time to wait!
ALS Registry Action Alert and Update
As Members of Congress head home for the month-long August recess, we need your help to increase funding for the national ALS registry.
The ALS Association secured a major victory last week as the Senate Appropriations Committee passed legislation that would provide $7,000,000 for the ALS registry! This represents a 40% increase in funding over last year and is a tremendous accomplishment considering the current economic climate and the fact that most other health programs were cut, eliminated or did not receive any increase in funding.
However, several more steps remain in the legislative process before this funding becomes law. Therefore, we need your help over the August recess to deliver a loud and clear message to your Senators: help find a treatment and cure for Lou Gehrig's Disease by voting for the FY 2010 Labor/Health and Human Services Appropriations Act, which would provide $7 million for the national ALS registry.
Please contact your Senators TODAY. Go to the Advocacy Action Center of our website, http://capwiz.com/alsa/utr/1/DMXCLAYPRJ/DNOULBDFCV/3754152771, to send a letter to your Senators and help make a difference in the fight for a treatment and cure.
Support Health CURE Reform
It's absolutely critical that you contact your Senators this August. Over the recess, much of what they hear will focus on "health care reform" and expanding coverage to the uninsured. While these are important topics in which The ALS Association is engaged, we must make sure Congress does not forget about the un-cured: people living with ALS who have no effective treatment available. We need Congress to direct attention to health CURE reform, not simply health care reform. After all, people with ALS need a treatment and cure as soon as possible and the ALS registry is a vital tool that can help us reach this goal. So please Contact your Senators TODAY!!
CDC Makes Progress in Building the ALS Registry
The ALS Association continues to partner with the Centers for Disease Control and Prevention as the Agency builds the national ALS registry. We are pleased to report that significant progress has been achieved as the registry pilot projects that were underway over the past several years are now complete. The Agency now is moving forward with the exciting next steps that include the pending launch of an online web portal, which will allow every person with ALS in the United States to easily enroll in the national ALS registry. A more detailed update on the ALS registry can be found here.
Enrolling in the Registry
Although enrollment in the ALS registry has not yet begun, The ALS Association is working with the CDC to ensure that as many people with ALS as possible enroll in the registry once it is formally launched. Therefore, we urge all PALS to sign-up as ALS Advocates via our website here: http://capwiz.com/alsa/utr/1/DMXCLAYPRJ/LPXELBDFCX/3754152771. By selecting ALS registry when signing-up, PALS will be notified as soon as the registry becomes operational and they also will receive detailed instructions on how they can enroll.
In the meantime, please make sure to contact your Senators. The future of the ALS registry depends on Congressional funding. And that funding is only possible if you contact your Senators and let them know that people with ALS don't have time to wait!
Monday, July 27, 2009
ALS Often Gets The Short Straw When It Comes To Unintended Consequences
Iplex and Insmed are back in the news.
From Reuters:
http://www.reuters.com/article/rbssHealthcareNews/idUSBNG6673520090727
If anybody wanted to write a soap opera about ALS and the straws of hope that patients try to grasp, off-label use of FDA-approved drugs, the long and expensive process of getting new indications for FDA-approved drugs, the confusing patent and regulatory situations that can cause availability of drugs in Europe but not in the United States, and the lack of ALS therapies (thus driving patients to try things or be guinea pigs)... Iplex could be the star.
From Reuters:
http://www.reuters.com/article/rbssHealthcareNews/idUSBNG6673520090727
UPDATE 1-Insmed stops supplying Iplex to new patients
Mon Jul 27, 2009 9:20am EDT
July 27 (Reuters) - Biopharmaceutical company Insmed Inc (INSM.O: Quote, Profile, Research, Stock Buzz) said it had stopped supplying new patients with its experimental drug Iplex for treating Lou Gehrig's disease, and it said its limited inventory on hand must be conserved for treating existing patients.
Insmed, which sold its Colorado manufacturing facility to Merck & Co (MRK.N: Quote, Profile, Research, Stock Buzz) earlier this year, said it has no longer the ability to manufacture the drug and it would not initiate further clinical trials with the drug at this time.
Iplex is approved for treating a growth hormone deficiency but is not currently sold for that purpose because of a court order related to patent infringement.
The company is studying Iplex as a potential treatment for muscular dystrophy.
About 70 patients currently receive the drug, including 12 in the United States, the company said. Most of the patients receive Iplex pursuant to a court-ordered extended access program to use the drug in Italy to treat patients with Lou Gehrig's disease, also known as amyotrophic lateral sclerosis, or ALS, the company said.
ALS causes muscles to weaken and eventually deteriorate. It usually develops in people between the ages of 40 and 60.
The company said it has sufficient Iplex inventory to supply these patients for no more than 24 months.
Any agreement with a third party to manufacture Iplex would not result in any production of the drug for at least 12 to 18 months, it said.
If anybody wanted to write a soap opera about ALS and the straws of hope that patients try to grasp, off-label use of FDA-approved drugs, the long and expensive process of getting new indications for FDA-approved drugs, the confusing patent and regulatory situations that can cause availability of drugs in Europe but not in the United States, and the lack of ALS therapies (thus driving patients to try things or be guinea pigs)... Iplex could be the star.
Wednesday, July 22, 2009
Offer To Help WIth The Little Things
Michael Goldsmith, who accomplishes big things, speaks wisely of how all can make a difference.
From The BYU Universe --
BYU professor promotes ALS awareness
By Adrienne Gorge
- Tue, 07/21/2009 - 20:45
With the bases loaded, the batter stepped up to the plate again. With two strikes against him, he nervously looked at the pitcher. Quickly the ball released from the pitcher and came whizzing toward the plate. With a surge of confidence, the batter swung. Crack. The ball went sailing into the air.
Michael Goldsmith, a law professor at BYU, hit a triple to get his Little League baseball team back into the game. It was a defining moment for him.
“It gave me confidence so that I never let two strikes worry me again,” he said.
When Goldsmith was diagnosed with ALS, or Lou Gehrig’s disease, in 2006, baseball became his refuge and his medium for awareness of ALS.
“Watching part of yourself die every few days makes it very personal,” he said. “Life has now become a race against the clock,” he said.
After attending a Baltimore Orioles baseball camp in 2008, Goldsmith decided to become an activist for ALS. He wrote an essay and submitted it to Newsweek magazine.
“I knew that my writing skills exceeded my baseball skills so I submitted an essay to Newsweek,” he said. “This was very much a long shot because Newsweek publishes just one essay out of 200 submissions, but this was better than no shot at all. I knew if I didn’t try I had no chance at all.”
Newsweek published the essay, and it caught the attention of Major League Baseball commissioner, who contacted Goldsmith and put him in charge of the event for ALS awareness.
Goldsmith said, “I was just a small part of a superb team whose efforts inspired me and provided a helpful distraction from my own difficulties.”
On July 4, Goldsmith threw the ceremonial first pitch at Yankee Stadium, in commemoration of the 70th anniversary of Lou Gehrig’s famous speech on the disease named after the Yankee Hall of Famer.
“I was naturally very excited but I tried not to personalize it,” Goldsmith said. “I viewed myself as representing everyone afflicted with ALS.”
As Goldsmith released the ball, it zoomed toward the plate.
“It was by far the worst throw I have ever made,” he said. “But my effort showed the crowd how pitifully weak ALS makes you. They gave me — and everyone I represent — a five minute standing ovation.”
Goldsmith’s mission is to promote ALS awareness and help encourage donations to finance research for a cure. He gave advice to BYU students on how to help with ALS patients. Since professional caregivers are expensive and insurance doesn’t cover in-home assistance, small acts of kindness help.
“If you offer to help with the little things — running errands, grocery shopping, house or yard work — it will make a huge difference,” he said.
Tuesday, July 21, 2009
Sunday, July 19, 2009
"Kids Really Aren't Aware Of Who Lou Gehrig Was..."
"...and we're losing our connection with him and the disease."
David Cone Still Pitches 4 ALS
From the New York Times, July 18, 2009 --
When David Cone finally made it to Suite 33 at Yankee Stadium on Saturday, two buttons of his blue shirt were opened, and he looked relieved. On the 10-year anniversary of Cone’s perfect game with the Yankees, he was thrilled that he did not bounce the ceremonial first pitch....Cone spoke at length with Chris Pendergast, a former school teacher with amyotrophic lateral sclerosis (Lou Gehrig’s disease) who he met in 1996. Before Pendergast left the suite, he had a pen placed in his mouth and signed his name in Cone’s guest book. Cone considered that a perfect ending to the day.
Saturday, July 18, 2009
Dear Abby Readers Learned About ALS in Veterans Today
Today was certainly a good one for getting the word out about ALS and veterans' presumptive disability.
Fred Campbell of the American Ex-Prisoners of War continues to serve his country and Abby in syndication has spread the word far and wide. The scintillating headline on the column didn't hurt, either ;-)
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 atfredrev@webtv.net.
Thursday, July 16, 2009
Here Is An ALS Advocate In Argyle
Tom Watson gets it when it comes to ALS.
http://www.nytimes.com/2009/07/17/sports/golf/17golf.html?em
From the New York Times, July 16, 2009...
So it was a blast of nostalgia when Watson, grinning from ear to ear, shot a dazzling 65 in the first round Thursday. Miguel Ángel Jiménez rolled in a long birdie putt on 18 to snatch the lead from Watson with a 64 later Thursday afternoon, but the day still belonged to Watson.
At 59, Watson seemed to turn back time, for one lovely day in Scotland anyway. “The body’s a little bit old, but the enthusiasm out there was very similar,” he said, still grinning after his round. “What a wonderful day to play.”
Watson’s lead held up through much of the afternoon. He was tied by Ben Curtis and Jiménez at minus-5 before Jiménez went ahead with a 66-foot putt on 18 for birdie. Turnberry counts on a usually relentless Scottish wind to give it snarl, but a windless day made it an easy target for players to shoot under par. The low scores were piling up, and a group of six golfers sat one shot behind the leaders at four under, including Fredrik Jacobson, Steve Stricker and Stewart Cink. Watson strode around the links course as one of golf’s genial elder statesmen, a revered figure who joins the PGA Tour players only twice a year now, for the Masters and the British Open. He has, however, made waves at a major championship in his advancing years, shooting a 65 in the first round of the 2003 United States Open. He became the inspirational story of that tournament, mostly because his caddie, Bruce Edwards, was carrying his bag while battling A.L.S. Edwards died a year later.
If you've never seen Tom and Bruce, here's a trip down memory lane... and the age of this video should be a reminder to us all that ALS is still doing its evil to tens of thousands of good people.
http://www.nytimes.com/2009/07/17/sports/golf/17golf.html?em
From the New York Times, July 16, 2009...
So it was a blast of nostalgia when Watson, grinning from ear to ear, shot a dazzling 65 in the first round Thursday. Miguel Ángel Jiménez rolled in a long birdie putt on 18 to snatch the lead from Watson with a 64 later Thursday afternoon, but the day still belonged to Watson.
At 59, Watson seemed to turn back time, for one lovely day in Scotland anyway. “The body’s a little bit old, but the enthusiasm out there was very similar,” he said, still grinning after his round. “What a wonderful day to play.”
Watson’s lead held up through much of the afternoon. He was tied by Ben Curtis and Jiménez at minus-5 before Jiménez went ahead with a 66-foot putt on 18 for birdie. Turnberry counts on a usually relentless Scottish wind to give it snarl, but a windless day made it an easy target for players to shoot under par. The low scores were piling up, and a group of six golfers sat one shot behind the leaders at four under, including Fredrik Jacobson, Steve Stricker and Stewart Cink. Watson strode around the links course as one of golf’s genial elder statesmen, a revered figure who joins the PGA Tour players only twice a year now, for the Masters and the British Open. He has, however, made waves at a major championship in his advancing years, shooting a 65 in the first round of the 2003 United States Open. He became the inspirational story of that tournament, mostly because his caddie, Bruce Edwards, was carrying his bag while battling A.L.S. Edwards died a year later.
If you've never seen Tom and Bruce, here's a trip down memory lane... and the age of this video should be a reminder to us all that ALS is still doing its evil to tens of thousands of good people.
From A Horrible Situation We Have Another Teachable Moment
On July 4 as I drove to Ohio to help pass out information as part of 4 ALS day at the Reds game, I passed Ezzard Charles Drive near downtown Cincinnati. It's a small world. I had not remembered that Ezzard Charles, the world heavyweight champion, was from Cincinnati. He died from ALS. It's a very small world when you pay attention to ALS and all the people it has stolen from us.
Yesterday as more on the terrible news on the Burr Oak Cemetery in Chicago unfolded, we learned that Ezzard Charles was buried there.
Today would be a good day for us all to spread the reminder that ALS is Lou Gehrig's Disease and it has cut short the lives of many mighty athletes... even a world heavyweight champion.
It's up to us to keep the memory and connections to ALS alive in people's minds at every opportunity.
Wednesday, July 15, 2009
Does G.I. Joe Have A Good Side?
Gianni Lopergolo would know.
Here is a story of a talented photographer who had a pretty incredible job and employer, Hasbro...
http://www.hasbro.com/discover/giannisbook.cfm
Gianni Lopergolo has always been an artist. Whether it was his appreciation for architecture at age 15, his passion for the art of special effects as an NYU film student, or his intense love of cinematography and photography – not only as a student, but also as a teacher and a trail-blazing photographer – Gianni thrives on inspiration. Not only getting it, but also giving it.
Gianni joined the Hasbro family in 2002 and completely reinvented the way product photography was done for the toy company. With over a thousand original photographs spanning his impressive Hasbro career, Gianni admits that he has had no formal illustration or set-building training. "Anyone can do what I do," he humbly confesses. "And I want to teach them how. I've taught others in the past and I can teach more."
At the young age of 39, Gianni has been living with ALS, also known as Lou Gehrig's Disease for three years. No longer able to work, but still as passionate about photography as ever, he has compiled this collection of images, which he hopes will teach, entertain and inspire.
The book will be newsworthy. Thanks, Hasbro.
Here is a story of a talented photographer who had a pretty incredible job and employer, Hasbro...
http://www.hasbro.com/discover/giannisbook.cfm
Gianni Lopergolo has always been an artist. Whether it was his appreciation for architecture at age 15, his passion for the art of special effects as an NYU film student, or his intense love of cinematography and photography – not only as a student, but also as a teacher and a trail-blazing photographer – Gianni thrives on inspiration. Not only getting it, but also giving it.
Gianni joined the Hasbro family in 2002 and completely reinvented the way product photography was done for the toy company. With over a thousand original photographs spanning his impressive Hasbro career, Gianni admits that he has had no formal illustration or set-building training. "Anyone can do what I do," he humbly confesses. "And I want to teach them how. I've taught others in the past and I can teach more."
At the young age of 39, Gianni has been living with ALS, also known as Lou Gehrig's Disease for three years. No longer able to work, but still as passionate about photography as ever, he has compiled this collection of images, which he hopes will teach, entertain and inspire.
The book will be newsworthy. Thanks, Hasbro.
How About A Commemorative Box Of Wheaties?
Wouldn't it be nice if General Mills might make a commemorative Lou Gehrig Wheaties box to celebrate Wheaties' birthday and to raise more 4 ALS awareness?
The following is from this morning's Wall Street Journal:
Wheaties, the cereal that calls itself the breakfast of champions, is celebrating its 85th birthday. Lou Gehrig was the first athlete to grace a Wheaties box, appearing on the back of the carton in 1934. Since then more than 150 individual athletes have been pictured on the box, and 50 teams have been featured. Michael Jordan was the first basketball player to get the honor in 1988, and he’s also the most frequent guest, appearing 18 times. Tiger Woods is on his heels at 16.
Monday, July 13, 2009
This Is An Example Of The Problem Posed By The Disease With The Impossible Name
Whoops... last night it seemed that this was another great example of MLB's contribution to ALS awareness. This morning the big error in the MLB story was pointed out by a reader. Ryan Zimmerman's mother has MS, not ALS. And so it goes with the problem of the "letter diseases." Even one of the biggest advocates for ALS, MLB, confused ALS with another letter disease. If MLB can't keep it straight, you know we're fighting an uphill battle!
I should have paid closer attention. If she had ALS, it would have been ZiALS foundation and not ZiMS foundation. Duh.
I should have paid closer attention. If she had ALS, it would have been ZiALS foundation and not ZiMS foundation. Duh.
Thank heavens for Lou Gehrig or ALS wouldn't have name that anyone would remember.
Thanks to MLB for raising an incredible amount of ALS awareness on July 4 and for continuing to communicate moving and informative stories with an ALS connection. Ryan Zimmerman of the Nationals, a first-time All Star, is featured.
http://mlb.mlb.com/news/article.jsp?ymd=20090713&content_id=5861060&vkey=news_mlb&fext=.jsp&c_id=mlb
http://mlb.mlb.com/news/article.jsp?ymd=20090713&content_id=5861060&vkey=news_mlb&fext=.jsp&c_id=mlb
Being at his first All-Star Game is even more special because his mother, Cheryl, will be in attendance. Cheryl has been afflicted with amyotrophic lateral sclerosis since 1995. ALS is an unpredictable disease that affects the central nervous system.
During the first five years of her illness, Cheryl was able to work as a teacher, but it grew worse by 2000. She is now confined to a wheelchair. Ryan said Cheryl's illness helped him become even keel throughout his life. It explains why one never sees him get angry with the media or with umpires in public. "That's a big part of it." Ryan said. "Me and my brother [Shawn] had to do some things that younger kids wouldn't have to do. We were not the only kids that ever had to deal with something like that. That added to my [composure]. I don't get too high or too low. "Before that, that's the way we were brought up. That's the way my parents were when we were young. I just think it rubbed off on us."
Cheryl continues to hang in there. Today she is one of the Board of Directors of ziMS Foundation, which raises money to help find a cure for ALS. Ryan is the president of the foundation. Asked how Cheryl is doing these days, Ryan said, "It's nothing really. It's just kind of steady. There is no cure, there is nothing, so it's the same thing every day. Obviously, we have dealt with it for a long time. It's almost second nature to us.
Thursday, July 9, 2009
Do You Really Think That A Moving Depiction Of ALS Is The Most Offensive Thing The Kids Might See On TV?
http://www.northamptonchron.co.uk/news/Anger-over-TV-ban-on.5442507.jp
Published Date: 09 July 2009
Bosses of a Northampton charity say they are puzzled why their controversial advert still remains banned from TV despite backing from an ad watchdog and other advertisers
Published Date: 09 July 2009
Bosses of a Northampton charity say they are puzzled why their controversial advert still remains banned from TV despite backing from an ad watchdog and other advertisers
Wednesday, July 8, 2009
Let's Get ALS On Their Radar - Nominate!
Surely someone with an intimate knowledge of ALS can get a seat at this table. By the way, ATSDR is the arm of the CDC responsible for delivering the ALS Registry.
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Tuesday, July 7, 2009
The Casualities Of War Continue Long After The Troops Come Home
ALS is an unacceptible fringe benefit of military service.
http://www.bu.edu/today/world/2009/06/25/one-four-vets-suffers-gulf-war-illness
http://www.bu.edu/today/world/2009/06/25/one-four-vets-suffers-gulf-war-illness
You May Have Missed This While You Were At The Ballpark On July 4
NBC and Today ran a piece that explains an American hero - Michael Goldsmith -- and how Major League Baseball came through with MLB 4 ALS.
Visit msnbc.com for Breaking News, World News, and News about the Economy
Here's A Wonderful Idea
From a letter in the San Francisco Chronicle...
Giants battle ALS
I was one of the nine ALS patients introduced at home plate before the Giants game on July 4.
Thanks to Major League Baseball and the Giants for supporting the organizations seeking a treatment and cure for ALS and for helping to create awareness of the disease.
I know I speak for the entire ALS community when I say that I hope the July Fourth "4 ALS Awareness" Day will become an annual event.
JIM BARBER Walnut Creek
Monday, July 6, 2009
ALS Registry Information To Be Released
Don't get too excited. I learned the art of the teaser from CBS last week;-)
This is information regarding the Massachusetts registry --
http://www.boston.com/news/local/articles/2009/07/05/middleborough_awaits_release_of_als_registry_information?mode=PF
ALS advocates still wait anxiously for news of the June meeting of the national ALS registry investigators. If anyone has any news, please comment.
Maybe TMZ will get on the case.
This is information regarding the Massachusetts registry --
http://www.boston.com/news/local/articles/2009/07/05/middleborough_awaits_release_of_als_registry_information?mode=PF
ALS advocates still wait anxiously for news of the June meeting of the national ALS registry investigators. If anyone has any news, please comment.
Maybe TMZ will get on the case.
This Picture Says It All
http://www.google.com/hostednews/ap/slideshow/ALeqM5gCGkEUs3KRj-NvOrwfLpyGO1OgkQD997UTI80?index=0
Michael Goldsmith and son at Yankee Stadium
Michael Goldsmith and son at Yankee Stadium
Sunday, July 5, 2009
Dreams Come True
Here is a nice article from USAToday about the Lou Gehrig ceremonies and 4 ALS. Dreams come true, but we have one more dream and we are all need to be part of it becoming reality. That dream is a cure for ALS.
http://www.usatoday.com/sports/baseball/2009-07-04-lou-gehrig-anniversary_N.htm
http://www.usatoday.com/sports/baseball/2009-07-04-lou-gehrig-anniversary_N.htm
Visit Every Major League Game From July 4
Here is a great collection of videos from 4 ALS observances at all of the MLB parks (look for the video links at the left side of the page)...
http://boston.redsox.mlb.com/news/article.jsp?ymd=20090704&content_id=5689200&vkey=news_bos&fext=.jsp&c_id=bos
http://boston.redsox.mlb.com/news/article.jsp?ymd=20090704&content_id=5689200&vkey=news_bos&fext=.jsp&c_id=bos
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