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

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.

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 --

http://universe.byu.edu/node/1080

BYU professor promotes ALS awareness

By Adrienne Gorge

- Tue, 07/21/2009 - 20:45

Photo courtesy of Michael Goldsmith. BYU professor Michael Goldsmith takes a cut at a pitch during a fantasy camp game.

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.

These Students Are Very Aware

From Readers' Digest --

http://www.rd.com/make-it-matter-make-a-difference/make-it-matter-students-of-northport-high-school/article73412.html

Be sure to watch the video.

"Kids Really Aren't Aware Of Who Lou Gehrig Was..."

"...and we're losing our connection with him and the disease."

http://www.floridatoday.com/article/20090719/NEWS01/907190331/1006/Group+putting+spotlight+on+Lou+Gehrig+s+disease

David Cone Still Pitches 4 ALS

From the New York Times, July 18, 2009 --

http://bats.blogs.nytimes.com/2009/07/18/cone/

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.

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.

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 atfredrev@webtv.net.

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 ;-)

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.

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.

http://www.huffingtonpost.com/2009/07/15/court-appoints-new-direct_n_234527.html

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.

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.

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:

http://online.wsj.com/article/SB10001424052970204423804574288331259894054.html

Remembering Gehrig With A Splash Of Milk

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.

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.

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

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.

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

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.  

http://guest.cvent.com/EVENTS/Info/Custom.aspx?cid=21&e=de864ef7-1d96-42d4-943f-0d510fae5a26

RESOLVE, a non-profit organization specializing in consensus building in public decision making, and CDC’s National Center for Environmental Health and the Agency for Toxic Substances and Disease Registry (NCEH/ATSDR) are accepting nominations for membership in each of the National Conversation on Public Health and Chemical Exposures’ six work groups. The work groups are: Work Group Chair Monitoring: collecting information on chemical use, exposure pathways, exposure levels, and health outcomes John Balbus, George Washington University Scientific Understanding: filling knowledge gaps on the health effects of chemicals Kevin Teichman, Environmental Protection Agency, Office of Research and Development Policies and Practices: reducing harmful chemical exposures and adverse health outcomes, eliminating inequities, and spurring the development and use of safer alternatives TBD Chemical Emergencies: preventing, preparing for, and responding to acute chemical incidents Andrea Kidd Taylor, Morgan State University Serving Communities: addressing local chemical exposure concerns to promote environmental justice and improve health Peggy Shepard, WE ACT for Environmental Justice Education and Communication: ensuring a well-informed public and a competent network of health care providers Kathy Rest, Union of Concerned Scientists

What will work groups do? Work groups will be responsible for addressing the following questions: What are the major components of the United States' approach in this area? What have been the major successes in this area over the last 40 years? What are the major shortcomings, gaps, redundancies, and emerging priorities? What solutions could help improve the system? What can be done quickly (1-2 years)? What recent or ongoing initiatives might impact this area? Which parties can take specific actions? As a product of their analyses, each work group will develop recommendations focusing on the role of NCEH/ATSDR and other federal agencies, while also addressing the role of non-federal partners (state and local agencies, non-governmental organizations, academia and the private sector). Work groups will prepare reports outlining their assessment and recommendations (draft report expected March 2010, final report expected July 2010). Work groups also will help formulate relevant questions to pose to members of the public through citizen conversation tool-kits, and to the wide range of National Conversation stakeholders through the web-discussion platform and at public regional and community forums. Who should apply? Work group members should have demonstrated expertise, experience and/or interest in the topics to be covered by the work group. They should be skilled in collaborative group processes. Finally, prospective members will need to have time to devote (an average of 10 hours per month) throughout the 18-month project period and should be willing to travel for occasional in person meetings.  RESOLVE and NCEH/ATSDR are committed to forming work groups with representation from a broad range of perspectives and expertise. We are seeking balanced membership across the public, private and nonprofit sectors, including: Federal agencies; State and local public health and environmental agencies; Tribal groups; Public health and environmental organizations; Community-based organizations; Industry; Academic and research institutions, and Individuals. Nomination Process Nominations for work group membership should be submitted using the online submission provess (see submit nomination button below). Self-nominations are encouraged. To nominate someone other than yourself, please confirm the nominee’s interest in membership prior to submitting the nomination form, and be sure to include your name and contact information in the “Nominating Individual” fields. Nominations will be accepted until July 20, 2009. Selection Process Each work group will be comprised of up to 30 members. Nominations will be reviewed by the work group chairs, RESOLVE and NCEH/ATSDR staff to ensure balanced representation. Applicants can expect to receive a response regarding selection by August 28, 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

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...

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/07/06/EDKB18IUPP.DTL

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

Surely The Cubbies Could Have Done Better

http://www.examiner.com/x-1553-Chicago-Cubs-Examiner~y2009m7d6-Cubs-miss-the-boat-honoring-memory-of-Lou-Gehrig

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 Picture Says It All

http://www.google.com/hostednews/ap/slideshow/ALeqM5gCGkEUs3KRj-NvOrwfLpyGO1OgkQD997UTI80?index=0

Michael Goldsmith and son at Yankee Stadium

Here Is A "Must Read" From The July 5, 1939 LA Times

http://latimesblogs.latimes.com/files/1939_0705_sports.jpg

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

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

This Is ALS

This is ALS.

It steals the body but somehow the human spirt within grows to achieve remarkable things.

Thank you, Michael Goldsmith.

http://www.nytimes.com/2009/07/05/sports/baseball/05vecsey.html?ref=sports

Kent Hrbek Rocks

http://mlb.mlb.com/news/article.jsp?ymd=20090704&content_id=5692870&vkey=news_mlb&fext=.jsp&c_id=mlb

...As all Major League teams honored the 70th anniversary of Gehrig's famous farewell speech at Yankee Stadium, Hrbek was called upon Saturday to deliver a reading of Gehrig's words. Certainly an emotional speech for Gehrig, Hrbek, too, had to hold his emotions in check as he read the words from first base at the Metrodome prior to the Twins' game against the Tigers.

"I had a hard time finishing up the speech," Hrbek said. "I got a little choked up just from the fact that you think about what this guy talked about and what kind of person he was."

Since his father, Ed, passed away from ALS during Hrbek's rookie season in 1982, Hrbek has dedicated much of his time to raise awareness of the disease and money for ALS research through various charities such as his annual golf and fishing tournaments....

He Knew Lou Gehrig and Lou Gehrig's Disease

http://www3.signonsandiego.com/stories/2009/jul/04/life-touched-lou-gehrig-8212-and-disease-named-him/?metro&zIndex=126713

You have to love a man who knows how to save two cakes a year ;-)

Bill, I'm Going To Remember This Day For A Long Time

So are we, Lou.

http://www.rep-am.com/articles/2009/07/03/sports/doc4a4ec78297572957600386.txt

http://espn.go.com/sportscentury/features/00014204.html

Curt Schilling Speaks

http://mlb.mlb.com/news/article.jsp?ymd=20090702&content_id=5662830&vkey=news_mlb&fext=.jsp&c_id=mlb

"Major League Baseball is sitting in front of more people, being seen, heard and watched by more pairs of eyes than at any time in its history," said Curt Schilling, who has been a longtime champion of efforts to help fight ALS. "On July 4th of this year more people will receive an introduction to ALS, what it is, what it does and what it means, than on any day in the history of mankind. For that we have Commissioner Bud Selig to thank. ... MLB has the power to change the world when focused and delivering the right message, and I am proud to see that message being presented to the world this year."

Try The Google Test Today

Usually if you Google "Gehrig's" for news, you find a lot of obituaries and a few fundraisers.  Today you find baseball news and 4 ALS and all kinds of awareness information.  July 4, 2009, is a refreshingly good day to help people understand the ALS problem.  Today millions of people will learn that Lou Gehrig's Disease is ALS, and nobody has figured it out 70 years later.

Thank you, Michael Goldsmith.  Thank you, Bud Selig.  Thank you, MLB.

If only every day were 4 ALS day!

Meet The Demmerle Brothers

There is a special stinging irony when ALS strikes a world-class athlete who is a good person.  Lou wasn't the only such victim...

http://www.stamfordadvocate.com/sports/ci_12750649

Here Is An Interesting Slant On Advocacy This July 4

The cause isn't ALS, but the thoughts are interesting as we celebrate our freedoms this Independence Day...

http://www.indystar.com/article/20090704/LOCAL/907040443/

It Was Lou Gehrig Appreciation Day Then, And It Still Is

Newsday covers Gehrig and 4 ALS.  The great articles just keep on coming this week!

http://www.newsday.com/sports/baseball/yankees/ny-splou0704,0,987875.column

Sports Illustrated Remembers Lou Gehrig

Dick Friedman - SI - gives us an interesting historical perspective.

http://sportsillustrated.cnn.com/2009/baseball/mlb/07/03/friedman.gehrig/

Check Out The Pre-Game Show

http://weblogs.newsday.com/sports/baseball/yankees/blog/2009/07/rain_then_clearing_in_the_bron.html

Meanwhile, this announcement from YES: during Saturday's pre-game show, which starts at 12:30 p.m., the network will air a story commemorating the 70th anniversary of Lou Gehrig's "Luckiest Man" speech. Toward the end of the piece, YES will show various members of the organization reciting Gehrig’s speech. Among those: Derek Jeter, Andy Pettitte, Mark Teixeira, Nick Swisher, Brian Cashman, Jorge Posada, Joe Girardi, CC Sabathia, A.J. Burnett, Xavier Nady and Johnny Damon.

Here Is A Tribute From Tampa

http://www2.tbo.com/content/2009/jul/03/sp-for-a-lesson-in-courage-this-fourth-of-july-loo/

The Speech Made The Movie

Here is a nice column on Lou Gehrig from Oklahoma --

http://www.newsok.com/berry-tramel-70-years-later-lou-gehrigs-message-lives-on/article/3382574?custom_click=lead_story_title

The CBS News Story on ALS by Katie Couric Ran Tonight

CBS Evening News http://www.cbsnews.com/

http://www.cbsnews.com/stories/2009/07/02/eveningnews/main5130584.shtml?tag=cbsnewsTwoColUpperPromoArea


Watch CBS Videos Online

By Katie Couric

(CBS) Lou Gehrig might have considered himself lucky. But he couldn't have imagined that seven decades after his emotional farewell, there would still be no treatment for ALS.

"When I was initially diagnosed, the doctors, three different doctors, told me the same thing: 'There's nothing we can do. Go home and die,' basically," said Philip Carlo, an ALS patient.

But CBS Evening News Anchor Katie Couric reports that science may finally be making the kind of progress that would have made the iron horse proud. "Much as those Yankees featured some of the greatest teamwork in the history of baseball. We have assembled a dream team of scientists and clinicians to work on the problem," said Valerie Estess, co-founder, Project ALS. Once competitors, scientists from both Harvard and Columbia are working together - with skin samples from both patients and healthy donors to help doctors figure out what causes ALS. "Well, for the first time we can now have billions of these cells to study in the laboratory and ask why it is that they get sick," says Dr. Kevin Eggan of the
Harvard Stem Cell Institute.

In ALS, nerve cells - called motor neurons - become incapable of sending messages from the brain, to the spinal cord, and on to the muscles - resulting in paralysis and ultimately death. "You're alive. But you watch yourself die, and you can't do anything about it," said Carlo. Rather than retrieving the motor neurons from the spinal cord of patients, a procedure that's far too risky, scientists are creating them from scratch. "Skin cells are very accessible, but they have nothing to do with the disease. So that's why we've had to find out a way of turning the skin cells into motor neurons," said Chris Henderson, Do-Director, Motor Neuron Center, Columbia University.

Couric decided to donate some of her skin to science. A tiny piece of skin is put it in a Petri dish, where cells then multiply. They are genetically modified to behave like embryonic stem cells - capable of becoming any kind of cell in the body. "They have all the characteristics of embryonic stem cells but they don't come from the embryo," said Dr. Eggan. They're then able to manipulate those very malleable stem cells to become motor neurons - enabling researchers to do what's never been done before: study the progression of ALS under a microscope.

"We want to compare the motor neurons from ALS patients with the motor neurons from healthy individuals. And through that we really do believe that we'll come to a fundamental understanding of what leads to ALS," said Henderson Which in turn, should lead to more effective treatment.

Carlo said the research is essential, "we have light at the end of the tunnel. And that -you can't ask for more than hope." Hope, that even the luckiest man on the face of the earth never had. At the end of his speech, Gehrig said, "I might have been given a bad break, but I've got an awful lot to live for. Thank you."

More about MLB and ALS here
More about Project ALS Here

This Week In Baseball Is All About Lou

http://mlb.mlb.com/news/article.jsp?ymd=20090702&content_id=5660122&vkey=news_mlb&fext=.jsp&c_id=mlb

Isn't this a great way to celebrate our nation? We celebrate a true sports hero and we do some good for a cause.

Watch The Sunday Chicago Sun-Times

Following was just tweeted:

@ScarfaceAl Read about two of my heroes, Aimee Chamernik and Lou Gehrig, in Saturday's Chicago Sun-Times.

@ScarfaceAl is the wonderful Gehrig biographer Jonathan Eig. You'll have to go to his twitter profile to figure out the name :-)

ESPN Does A Beautiful Job With The Lou Gehrig Letters

This is just an outstanding presentation of an important glimpse into history! These are not to be missed.

http://espn.go.com/mlb/flash/gehrigletters

Thanks, ESPN.

Columbia University Remembers Lou Gehrig

Here is a nice tribute from Lou's alma mater...

http://www.gocolumbialions.com/ViewArticle.dbml?DB_OEM_ID=9600&ATCLID=3759032

Go Columbia, Beat ALS!

While We Wait For the Katie Couric CBS News and Today Show Segments on ALS

Please take a moment and visit this link on the Major League Baseball site --

http://mlb.mlb.com/4als/index2.jsp

It tells us what this weekend is about, and it includes some wonderful video that helps us understand the greatness of Gehrig and the horrible irony of the disease that took him out of the lineup.

We are grateful to MLB for giving us this weekend to remember and to raise much needed awareness. We are grateful to Michael Goldsmith for presenting the concept. We are grateful to all of the brave people with ALS who give us the reason to keep up the fight against this outrageous disease.

There Is A Wonderful 4 ALS Column In The Boston Globe

This one speaks volumes about Lou Gehrig and the magnitude of 4 ALS.

http://www.boston.com/sports/baseball/redsox/articles/2009/07/02/als_event_saturday_proves_charity_begins_at_home_plate?mode=PF

Below is an excerpt.

Charity begins at home plate

By Dan Shaughnessy, Globe Columnist  |  July 2, 2009

Going to Fenway Park for Red Sox-Mariners Saturday? Bring a box of tissue. Bring your checkbook, too. Boston’s ancient baseball theater will be one of 15 major league parks honoring the 70th anniversary of Lou Gehrig’s farewell speech (“I consider myself the luckiest man on the face of this earth’’) and raising funds to support ALS research. It’s called “4ALS Awareness’’

Nice going, MLB. In 1939, amyotrophic lateral sclerosis took Gehrig off the field after 2,130 consecutive games and now baseball is joining the fight against the deadly disease.

“We’re involved with a whole series of charities,’’ explained commissioner Bud Selig. “We get asked a lot. But I’ve had inquiries about ALS from a fair number of people over the years, because of the Lou Gehrig connection. I said to myself, ‘This disease is so horrible and it affects so many people and it’s as dreaded today as it was in 1939.’ This is our chance to increase awareness, raise some money, and reach out to all the people affected and show people we do care.

“I can’t give any more reason than that. That’s how it happened. I wish my other decisions were as easy as this one.’’

...

Warm Up The TV For The Today Show

Tomorrow (Thursday) morning, the Today Show has a segment on the 70th anniversary of Lou Gehrig's farewell slated.

Has CBS Found A Way To Get Us To Watch Their Evening News Every Night?

Toward the end of this evening's CBS news with Katie Couric, they ran the teaser again on their ALS story that said it will run tomorrow. "New treatments for Lou Gehrig's Disease may be as close as the surface of your skin."

Tomorrow... you're always a day away...

They're finishing up the news right now as I type. The final story is on Michael Jackson's patented shoes. They had time for that story but not ALS. Go figure.

ESPN Will Have Lou Gehrig Features This Weekend

Thanks to the heads-up from @ALSlesturner on twitter... ESPN will have Lou Gehrig features this weekend and tomorrow the great Gehrig biographer Jonathan Eig will be interviewed on ESPN.

How great is this?

We're finally getting some national resolve to get the word out about ALS thanks to Michael Goldsmith and Lou Gehrig!

Fire Up The Popcorn Popper For Sunday!

Here Is The Definitive, Good-News Press Release on 4 ALS MLB Activities

This will just make you smile when you read it. It will be a tearful smile by the time you finish.

Thanks, Major League Baseball.

http://mlb.mlb.com/news/press_releases/press_release.jsp?ymd=20090701&content_id=5636318&vkey=pr_mlb&fext=.jsp&c_id=mlb

Major League Baseball clubs hold special on-field ceremonies on July 4th to honor 70th anniversary of Lou Gehrig's farewell speech
07/01/2009 11:57 AM ET
MLB.com

In an effort to raise awareness and financial support for organizations leading the fight against ALS (Amyotrophic Lateral Sclerosis), otherwise known as Lou Gehrig's Disease, every Major League Baseball Club playing at home on July 4th will conduct a special on-field ceremony to commemorate Lou Gehrig's Yankee Stadium farewell speech. During these special ceremonies, all Clubs will honor Gehrig's memory by recreating part of his "Luckiest Man" speech (Excerpt at the end of the release).

"Seventy years ago, Lou Gehrig delivered an impassioned speech that has become part of American History," said Baseball Commissioner Allan H. (Bud) Selig. "Major League Baseball is proud to devote the Fourth of July to Lou Gehrig and the disease that bears his name. We are pleased to have this opportunity to help find a cure for ALS and help those who are suffering from the disease."

The New York Yankees will host a special "4 ♦ ALS Awareness" ceremony at Yankee Stadium prior to their 1:00 p.m. (ET) game against the Toronto Blue Jays. During the pre-game ceremony, the Yankees will recognize Michael Goldsmith, a lifelong baseball fan who contributed to the development of the "4 ♦ ALS" initiative.
"Seventy years after Lou Gehrig's farewell speech, no cure exists for ALS," said Goldsmith. "Doctors have no real way even to slow its devastating progression. Because research for a cure is still in its infancy, defeating ALS will require the same determination that Lou Gehrig and Cal Ripken, Jr. demonstrated in setting records for consecutive games played. I live for the day when all ALS patients can give you a standing ovation for fighting this fight with us."

On July 4th all on-field personnel, including players, coaches, umpires and groundskeepers will wear a "4 ♦ ALS" patch. In addition, to honor Gehrig, who played first base with the Yankees for 17 years, a special "4 ♦ ALS" logo will appear on top of first base in each ballpark. Authenticated first bases from the July 4th games will be auctioned off at a later date on MLB.com to raise additional funds for ALS. A special "4 ♦ ALS" video was created for Clubs playing at home on July 4th.

In addition, individual Clubs will support the ALS cause on July 4th. For example, American Idol Finalist Michael Johns will perform the National Anthem prior to the Baltimore Orioles vs. Los Angeles Angels of Anaheim game; the Philadelphia Phillies have raised over $865,000 for ALS this year alone; and the Minnesota Twins are one of many Clubs that have donated a suite for ALS families.

In support of the "4 ♦ ALS" initiative, MLB Network will air an edition of "Studio 42 with Bob Costas" featuring an interview with Cal Ripken, Jr. on July 5th at 8:00 p.m. (ET) followed by the Academy Award-winning movie, "The Pride of the Yankees" at 9:00 p.m. (ET).

MLB.com has established an online community at http://mlb4als.mlblogs.com, where representatives of the four organizations working with Major League Baseball, as well as others impacted by ALS, are collaborating to share stories, research and further opportunities to unite in support of ALS. The four leading organizations working with MLB on the on the "4 ♦ ALS" campaign are: The ALS Association, ALS TDI, MDA's Augie's Quest and Project A.L.S. ALS destroys the nerve cells controlling muscles, ultimately causing complete paralysis. The average life expectancy is three to five years after diagnosis.

The ALS Association is a non-profit organization fighting Lou Gehrig's Disease on every front. Through global research, providing assistance for people with ALS via a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

The ALS Therapy Development Institute (ALS TDI) has a single mission-to develop therapeutics that slow and stop ALS. The nonprofit Institute has a 30 person research team working aggressively by applying the best practices on behalf of today's patients.

MDA's Augie's Quest, the Muscular Dystrophy Association's ALS research initiative, is an aggressive, cure-driven effort singularly focused on finding treatments and cures for ALS. MDA funds over $23 million annually and has funded more than $250 million since its inception.

The mission of Project A.L.S. is to create a new paradigm for neurodegenerative disease research. They identity the world's leading researchers and clinicians and mobilize them to work together as teams in the areas of genetics, drug discovery, stem cells, and disease pathways. Each project is vetted and approved by its research advisory board. Project A.L.S. has raised over $38 million to fund these efforts.

Lou Gehrig's "Luckiest Man" Speech (Abbreviated Version)

"Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.

I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans.

Look at these grand men. Which of you wouldn't consider it the highlight of his career just to associate with them for even one day?

Sure I'm lucky. When the [New York Giants], a team you would give your right arm to beat, and vice versa, sends you a gift-that's something.

When everybody down to the groundskeepers and those boys in white coats remember you with trophies-that's something.

When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter-that's something.

When you have a father and a mother who work all their lives so you can have an education and build your body-it's a blessing.

When you have a wife who has been a tower of strength and shown more courage than you dreamed existed-that's the finest I know.

So, I close in saying that, I may have had a tough break, but I have an awful lot to live for."

This Is A Great Week For Googling Gehrig In The News

There are a lot of good news stories this morning about Lou Gehrig and 4 ALS and MLB and Michael Goldsmith.

Here is one of them --

http://www.thenewstribune.com/sports/columnists/mcgrath/story/796530.html

Hmmm... "Lou Gehrig Stadium" ... like the sound... or maybe "Cure Lou Gehrig's Disease Stadium" and then they can sell the naming rights when that name is passe.