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.

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

---

By Adriana Colindres

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.

This Is Advocacy

...simply at its best.

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

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/

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.

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 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.