INDESTRUCTIBLE

Dear Friends,
Early in the morning of July 3, my brother Ben Byer lost his battle against ALS. He fought up until the end but his body did not match his spirit. Funeral services will be held on Tuesday, July 8 at 2:30 pm at Shalom Memorial Park, 1700 W. Rand Road in Arlington Heights, IL. The party that Ben and I were planning for July 17th, to thank all of you, our supporters and friends, will still happen and we welcome you there if you are in the Chicago area. In addition to celebrating the Chicago Premiere of Indestructible, we will celebrate Ben's life and the legacy he is leaving. He would not want it any other way. Our website has the information and we hope you will come to celebrate his life with us. I will continue to work toward fulfilling the mission of ALS Film Fund in raising awareness and change for this brutal disease in Ben's name, his memory, his spirit and his honor.
Sincerely, Rebeccah Rush
email: alsfilm@gmail.com
phone: 312-848-5919
web: Indestructible.com

A Tribute to a man they called Blazeman

"Decision Must Be Instant - Commitment Must Be Total."

The fight and the story that truly lives on. Started by Ironman Jonathan Blais in 2005 and thanks to Mia Richter the ALS Warrior Poet carries on the tradition. Jon Blais died in May 2007 of ALS.
Jon was a 35 year old triathlete. In 2005 and after SIXTEEN AND A HALF HOURS of gut-wrenching physical, mental and emotional depletion culminated in one triumphant moment on the shores of Kona, Hawaii, in 2005. Jon Blais log-rolled across the Ironman World Championship finish line and heard the immortalizing words "You are an Ironman!"
In 2004 he felt his arms, shoulders and chest twitching and shrugged it off blaming pinched nerves from all his training. By 2005 he realized it was something more serious.
The diagnosis: ALS, or Lou Gehrig’s disease. The insidious progressive neurodegenerative disease affects nerve cells in the brain and the spinal cord, slowly shutting down the body’s muscular and neurological functioning, while cruelly keeping the mind intact.
"It’s tragic that my doctors gave me the same prognosis they gave Lou Gehrig 70 years ago: ‘Go home and get ready to die,’" says Blais.
He finished 2005. In 2006 he was in a wheelchair like he predicted and he passed away before the 2007 race.



Prior to being diagnosed with ALS, Blais was an avid triathlete and shared his passion for triathlon with activities such as mountain climbing and hiking. Blais applied his love for the outdoors to his profession, teaching students with special needs. Two years after his diagnosis in May of 2005, Blais founded the Blazeman Foundation, an organization dedicated to promoting awareness of and fundraising for those battling ALS. The foundation continues to grow and has expanded this year to include Team Blazeman, a group of athletes called "Blazeman Warriors" who have committed to raising awareness and funding a search for a cure for ALS… so others may live.
"Jon inspired Ironman staff, athletes and spectators on many different levels. From his outlook on life and the wisdom he exuded while battling ALS to his passion for Ironman, the impact Jon made will stay with us for the rest of our lives. Indeed, he fought the great fight, and we will miss him," said Ben Fertic, president of Ironman.
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig’s Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

For more info :
ALS Warrior Poet
War On ALS

Read More on Jon Blais
Read More at Triathlete Magazine
San Diego Magazine Artilce about Jon

People With ALS Are Tired of Being Thrown Under the Bus, Senator Coburn

http://www.politico.com/blogs/thecrypt/0608/GOP_climbing_aboard_Coburn_Omnibus.html

By Ryan Grim

Reid spokesman: GOP climbing aboard Coburn Omnibus

Jim Manley, spokesman for Senate Majority Leader Harry Reid (D-Nev.), responds to Coburn's threat of a "rough time" if Reid doesn't allow debate and amendments to the "Coburn Omnibus." "The idea that Sen. Coburn is talking about the traditions of the Senate is ridiculous," Manley writes in an e-mail. "Look what happened last time we did this. Sen. Coburn held up action on dozens of bills for narrow, personal reasons, demanding debate and four amendments. These bills were held up for months; the Senate had to waste precious time to allow him to offer a few amendments. Each amendment failed by overwhelming bipartisan margins (63, 76, 67, 73 votes against), and the final bill passed 91-4 (Coburn, DeMint, Vitter and Inhofe being the only Nos). That is not debate and amendment; it is abuse, obstruction and delay," he adds. "Things have gotten so bad that Republican senators have approached Sen. Reid to ask that their bills be included in the package."

No Splash?

How many people noticed that on the "longest" day of the year in the northern hemisphere, the world was supposed to be made aware of ALS (Motor Neuron Disease). The spark of caring was to have been turned into a fire of making a difference. You hadn't heard about this?

Isn't it ironic that on the same day the media were full of articles on the U.S. Olympic diving trials where the goal is to enter the water with nary a splash?

No splash is good in diving. No splash is bad for any effort that involves the word awareness.

Keeping in mind that the raw score is multiplied by the degree of difficulty (which isn't all that tough in the age of electronic communications), the five judges score ALS/MND Global Awareness Day 2008 -- 0.0, 0.0, 0.0, 0.0, 1.0 (one judge liked the poster just a little).

Disease gives in to dream

This article appeared in the St. Petersburg Times on Sunday, June 22, 2008

Christine Brogle methodically chews a piece of Big Red gum to keep the tears away as she waits for the Rays to take on the Chicago Cubs.

The 44-year-old adjusts the Cubs jersey on her boyfriend of three years, Charlie Gray.

She folds the Cubs blanket draped over his willowy legs and tucks in the Cubs pillow supporting his back.

The two Seminole residents haven't been to a baseball game since amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, put Gray in a wheelchair.

Getting ready, getting comfortable and navigating the bustle of Tropicana Field just became too difficult.

Gray, 47, has been left with the body of a man twice his age. But Thursday he was taken back to his childhood, if only for a few moments, to fulfill two dreams — his and Brogle's.

• • •

Gray grew up a Cubs fan, just 50 miles outside Chicago in Michigan City, Ind. He would often skip school to catch games at Wrigley Field.

And he remained loyal as he ran a car dealership in Grand Rapids, Mich., and retired to Treasure Island.

He met Brogle on the beach June 2, 2005, and they soon began dating. A year later, Gray was diagnosed with ALS.

The disease attacks neurons in the brain and spinal cord, progressively leaving the patient paralyzed and unable to speak.

He was given three years to live.

"If he gets better, we're getting married," Brogle said.

But she wanted to surprise him with something to raise his spirts as victory seems to be slipping away.

After a month of e-mails and letters to the Cubs, the Rays and the Florida ALS Association, Brogle was able to secure some time with Cubs manager Lou Piniella.

Gray, still in the dark on the surprise, was not happy when Brogle rushed in early from work. She told him to hurry up and get ready, because they were going to a game.

Speech is a struggle, and he can no longer move his arms or legs. But his eyes now betray the excitement of meeting his boyhood heroes.

Second baseman Mark DeRosa is the first player to see him, posing for a picture and signing his jersey and pennant.

Next, right fielder Kosuke Fukudome walks by. Brogle flagged him down, tilting Gray forward to reveal Fukudome's name stretched across the back of his jersey.

• • •

ALS affects about 1,200 people in Florida, typically striking between the ages of 40 and 60, said Kamden Kuhn, public relations coordinator of the Florida ALS Association.

The association raises money for research, provides temporary care to give primary caregivers a break, and furnishes patients with motorized wheelchairs and speech devices.

Although some drugs have been found to alleviate its symptoms somewhat, ALS remains incurable.

The disease has progressed quickly for Gray. Just this past April, he was able to walk. But a sudden bout of illness landed him in the hospital. He emerged 20 pounds lighter and in need of a wheelchair.

His atrophied arms and legs seem out of place beneath active eyes and hair still streaked with brown.

• • •

Finally, Piniella emerges from the clubhouse and briskly strides up to Gray, immediately noticing Gray's bare head. Surely this Cubs fan needed a cap.

Piniella returned with a box filled with all sizes, and tried them out until he found the one that fit.

Brogle told the manager that Gray had something to say.

Piniella, a Tampa native sarcastically called "Sweet Lou" for his infamous temper, leaned in close to catch his words: "Thank you for supporting ALS."

• • •

Each year, Piniella sponsors a golf tournament in St. Petersburg to raise money for ALS research and he has appeared in numerous public service announcements to raise awareness. He also donates memorabilia to be auctioned.

"He has really helped boost our revenue," Kuhn said. Still, she said she could not recall a patient ever getting to meet him like this.

• • •

It was game time, but Gray wanted to talk baseball with the legend. "We can't wait to have Soriano back," Gray said of the injured star.

"You want to meet Alfonso?" Piniella replied.

As the final notes of The Star-Spangled Banner floated in from the field, Piniella rushed into the locker room. Soriano was getting his hand worked on by team doctors, but he dropped it to meet Gray. A smile slowly crossed Gray's face as they got a group picture.

Fighting back tears, Brogle leaned in to kiss him. For a moment, Gray seemed to have forgotten about the constant pain and discomfort.

"I got my wish," she said.

Andrew Dunn can be reached at (727) 893-8150 or adunn@sptimes.com.

Veteran with ALS Testifies to Congress

The House Veterans Affairs Committee, Subcommittee on Disability Assistance received a first hand education about the impact ALS has on our military men and women during yesterday's Subcommittee hearing on HR 5454. Jeff Faull, a Navy veteran with ALS and Vice Chair of The ALS Association's VA Issue Team, testified before the Subcommittee and urged them to support HR 5454, which would establish a presumption of service connection for ALS, ensuring that veterans have access to health and disability benefits regardless of when or where they served in the military.

During the hearing, Jeff shared about his service in the military aboard the U.S.S. Theodore Roosevelt and gave the Subcommittee a clear understanding of the true nature of ALS, how it has impacted him and his family and thousands of others across the country.

"I can't make the walk to see [my daughter] Breanna play soccer. I don't have the arm strength to shoot a basketball with my older daughter Tiffany," he said. "I will more than likely be in a wheelchair when it comes time to teach them to drive. These are the treasures this disease steals from thousands of veterans every year. That is, before the disease takes our lives."

Jeff also shared the numerous studies showing that veterans are approximately twice as likely to develop ALS as those who have not served in the military. And he told the Subcommittee how the VA continues to deny veterans with ALS needed benefits despite the evidence linking the disease to military service.

"My question, as a veteran with ALS trying to establish service connection is what additional proof must I provide? How many more studies are needed? How many veterans have to develop ALS and die from it before the VA takes action?

"I can only hope that this quick glance into my life with ALS and attempts with service connection grant you the understanding to see the importance of establishing a presumption of service connection for all veterans with ALS, which is exactly what H.R. 5454 would do. We have to fight for our lives. We should not also have to fight for the benefits that the evidence shows we deserve."

Members of the Subcommittee repeatedly expressed support for HR 5454 throughout the hearing, which also examined several other bills under the Subcommittee's jurisdiction. However, immediately following Jeff's testimony, Subcommittee Chairman John Hall (D-NY) succinctly conveyed the views of the Subcommittee, asking rhetorically, "How many more studies are needed?"

The entire text of Jeff's testimony to the Veterans Affairs Committee is available here . Photographs taken during the hearing can be found via the links below:

Subcommittee Chairman John Hall and Jeff Faull;
Jeff with Congressman Henry Brown, sponsor of HR 5454; Jeff Faull delivers testimony to the House Veterans Affairs Subcommittee on Disability Assistance

The ALS Association Builds Support for HR 5454

During Thursday's hearing, we won the support of several Veteran Service Organizations who announced their support for HR 5454. They include the American Legion, Disabled American Veterans (DAV), National Association of State Directors of Veterans Affairs, Paralyzed Veterans of America (PVA), and Vietnam Veterans of America.

The ALS Association has been working with Members of Congress to build support for HR 5454. Thanks to the outreach of advocates during National ALS Advocacy Day, we have more than tripled the number of cosponsors of the bill in the House in just the past few weeks alone. We now have nearly 40 House cosponsors, up from just 11 before Advocacy Day!

The office of Congressman Henry Brown (R-SC), the sponsor of HR 5454 praised the effectiveness of our outreach in generating such rapid support in Congress. We are working closely to coordinate our efforts and advocacy strategies with Congressman Brown, and the Advocacy Department will provide additional information to the ALS community to let you know when your outreach can make the most difference.

Join the Roll Call of Veterans

Please continue to urge veterans with ALS to join our Roll Call of Veterans via our website here. In addition, if you have lost a veteran to this disease, send their name, branch of service and hometown to us at advocacy@alsa-national.org and we will add them to our Roll Call as well.

While we are reaching out to the Veterans Affairs Committee to continue to let them know the true magnitude of this disease in the military, we want to identify as many veterans as possible and keep those veterans active and engaged in our outreach to Congress. After all, our advocacy in support of HR 5454 must continue throughout the year if we are to realize success and ensure that veterans with ALS receive the benefits they deserve.

So please forward this alert to your entire address book. If you are with an ALS Association Chapter, please continue to share this and other Advocacy Updates with the ALS community in your area. Together we can continue to make a difference!

If you have any questions about this update or joining the Roll Call of Veterans, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA.

Nationwide Boycott of Oklahoma Football 2008 - 2009

LETTER To The Editor

Prepared By: Charles B. Ormsby (Skip) secondary caregiver to Gwyn B. Ormsby, wife of brother Richard M. Omsby "Chad". Gwyn was a Patient with ALS (PALS) who passed on 2008 Mar 17 after a seven year battle with ALS.

Prepared For: Okalahoma Media Outlet

Contact Information – Charles Ormsby (Skip)

E-mail: ayeons1382@yahoo.com
Mail: PO Box 1072 -- Lake Oswego OR. 97034-0121

Support Passage of US Senate Bill S.1382, ALS Registry Act
http://www.neighborhoodlink.com/org/ayeons1382

ALS Family Story of Laura Stanley, Corona CA
http://abclocal.go.com/kabc/story?section=news/health&id=6076239

Press Release from Charles B. Ormsby (Skip)
re: Article from Wall Street Journal Dec. 21, 2007 -- Page A1 Sen. Tom Coburn

To The Editor:

Oklahoma has been devastated in 2008 with a deadly tornado season. Resources are required to recover from wounds to individuals, family, neighbors, and communities. How would you feel if one person stymied those efforts and cut off potential public disaster relief funds?

Thomas Coburn MD, Republican, junior, US Senator from the State of Oklahoma has done just that to ALS patients (Amyotrophic Lateral Sclerosis / Lou Gehrig’s disease). Including susceptible military veterans – nation wide and in the State of Oklahoma. ALS is an orphan condition and like a tornado is capricious about where it touches down and inflicts devastation. Diagnosis of ALS means slow death, there is no cure.

Patients with ALS (PALS) become paralyzed from the neck down. Death is inflicted upon PALS by suffocation. Due to paralysis of diaphragm muscles and complications from pneumonia (drowning). With likely financial ruin to surviving family that must pay for 24 x 7 supportive care in time and money.

PALS, and caregivers are seeking a cure. We met in 2008 May in Washington DC. Our top legislative goal in 2008 is the establishment of a national registry of ALS patients. This is to identify and link unknown causes just like in tornado abatement research.

Fair warning: Citizen’s in Oklahoma need to act today and, stop US Senator Coburn’s (Dr. No) "Hold" action on US Senate Bill 1382 – ALS Registry Act.

ELSE: Caregivers and supporters of ALS patients are preparing to urge a nationwide boycott of all Oklahoma football and athletic events in the 2008 – 2009 seasons.

"Loose one for Lou and End Registry Lockout!"

Please Visit: http://www.neighborhoodlink.com/org/ayeons1382

Thank you, for your time, compassion, and action.
Charles Ormsby (Skip)

May Was ALS Awareness Month - What Were The Outcomes?

May was ALS Awareness Month.

Again this year it featured daily vignettes of families dealing with ALS on the MDA ALS site. This year it featured a flatteringly similar campaign of vignettes of families dealing with ALS on the ALSA site.

We saw almost a thousand advocates converge (some enduring huge amounts of difficulty to get there) on Washington, DC, to talk to legislators about old and new legislative priorities related to amyotrophic lateral sclerosis and the wicked wake it leaves, especially for veterans.

What were the outcomes? What were the measurables? What value did ALS Awareness Month add?

Google gives us an interesting and inexpensive insight into news measures. Google "amyotrophic" and look at news items in May. There are a few items related to the vignettes. There are more items related to local human interest stories. There are more than enough obituaries. There are fundraisers. There are a few press releases from the bio-pharm industry with "promising" science which might impress investors.

Try the same exercise to look at the Google news archive from any other month.

Did ALS Awareness Month give us any increase in the quality or quantity of news related to ALS awareness?

Top 10 Worst Diseases?

The ALS Registry Act is needed to build on projects underway in three test cities and is supported even by this Administration. This act would help determine the causes of ALS, and more importantly help to find an effective treatment for this disease. We need this registry now! After ten years we still think that at any given time 30,000, in this country, are living with ALS. That is equal to the same old statistics that 5,000 will die annually. I would like to defend ALS but where do we draw the data from? How long are we going to allow our awareness efforts to be overshadowed by outdated recording methods? ALS is complicated as well as intense, 2-5 years life expectancies make it all the more important to monitor diagnoses as well as labeling the correct cause of death.
Millions of people each year have perished as a result of one of any number of seemingly unstoppable diseases. Here are but ten, in no particular order, that have wiped out mankind since the earliest recordings. The list, without ALS was found at "The List Universe.com".

1. Polio 10,000 Deaths since 1916
2. Influenza 36,000 Deaths per year
3. Spanish Flu Between 1918-19: 50-100 Million dead
4. Bubonic Plague 250 Million Europeans Dead (1/3 population)
5. Malaria 2.7 Million Deaths per year-2800 children per day
6. Ebola 160,000 Deaths since 2000
7. Cholera 12,000 Deaths since 1991
8. Smallpox Native Americans suffer a population drop from 12 Mil. to 235,000
9. AIDS 25 Million since 1981
10. The Black Death 75 million Deaths

"Democracies Don't Let People Die"

There is an op-ed in this morning's Wall Street Journal by Daniel Henninger entitled, "Democracies Don't Let People Die."

It speaks of what is happening (or more correctly what isn't happening) in Myanmar and China.

When I first read the title of the piece, I thought it might be about ALS in America.

Senator Tom Coburn Please Come

Senator Tom Coburn has successfully blocked the ALS Registry Legislation that passed the House by an overwhelming margin and enjoys rare bipartisan co-sponsorship by 74 of his Senate colleagues. It is hard to believe that one individual can hold this legislation hostage but it is true. It sure should scare all citizens that this can be so.

Over 500 ALS patients will attend the ALS Association National Advocacy and Public Policy Conference in Washington, D.C., next week where most of them will visit their Congressional legislations. While in Washington all of the conference attendees will band together in a candle light ceremony to remember the 5600 that died from ALS since the conference only a year ago.

Actually since there is no credible documentation of how many have ALS or die each year, the 5600 is a guesstimate that apparently has remained unchanged and unchallenged for the past decade. That is the whole purpose of the legislation, to build a credible database by which to evaluate the true prevalence of the disease and provide data that can direct research to help find the cause and a cure.

Why is a registry needed asks the good Senator Coburn? Without reliable data it is likely that direction of research and allocation of research funds will likely allow the absence of a diagnostic test, ignorance of the cause, and the failure to find meaningful therapies, much less a cure, will continue to be the status quo.

Somehow that status quo speaks ill of the will of a nation that can put astronauts in space on a regular and frequent basis. Or a nation who's pharmaceutical companies can spend billions on advertising rather than the research needed to address "orphan" diseases like ALS.

Shown above is a notice that has been posted by one of those who lost a loved one to this disease for which there are no effective therapies and no cure. It is a disease that ends up with a mind that is left intact in a body that is completely paralyzed. Maybe Senator Coburn missed these sessions in his purported medical training. No matter, because he is being invited to attend this commemorative candle light ceremony at the World War II Memorial on the Capitol Mall.

I wonder if he will have the courage to face those suffering from the disease and the many more who have lost loved ones. If he doesn't maybe some of these brave souls will hold a ceremony in front of his office in the Senate Office Building.

I think it is ironic knowing the Senator's one man log jam to view the warm image shown on his website.

ALS VA Registry Closed, Court Dismissed

The Department of Veterans Affairs (VA) Cooperative Studies Program was established to create a National Registry of Veterans with Amyotrophic Lateral Sclerosis (ALS). United States military veterans with ALS were identified through national VA electronic medical record databases and nationwide publicity efforts for an enrollment period of 4 1/2 years. Diagnoses were confirmed by medical record reviews. Registrants were asked to participate in a DNA bank. Follow-up telephone interviews are conducted every 6 months to track participants' health status. As of September 30, 2007, 2,400 veterans had consented to participate in the registry, 2,068 were included after medical record review, 995 were still living and actively participating, and 1,573 consented to participate in the DNA bank. 979 participants had been enrolled in the registry for at least 1 year, 497 for at least 2 years, and 205 for at least 3 years.

Fourteen studies were approved to use registry data for epidemiological, observational, and interventional protocols. This registry proved to be a successful model for identifying large numbers of patients with a relatively rare disease and enrolling them into multiple studies, including genetic protocols.
The VA concluded that if you served in the Southwest Asia Theater of Operations (Iraq, Kuwait, Saudi Arabia, the neutral zone between Iraq and Saudi Arabia, Bahrain, Qatar, the United Arab Emirates, Oman, the Gulf of Aden, the Gulf of Oman, the Persian Gulf, the Arabian Sea, the Red Sea, and the airspace above these locations) between August 2, 1990 and July 31, 1991 then ALS is presumed service connected. This means that those that apply for benefits are service connected automatically.

Just when the ALS data starts to really focus on the occurrences, would'nt you know it, the project runs out of funding and the enrollment was halted. The military areas of service where established and a set of new rules where ordained. This ALS VA Registry rule book was an opened and closed case.

What did the ALS VA Registry accomplish? Was it a genuine concern for the causes of ALS, basic benefits defined or to avoid possible future lawsuits? Was the VA aware of a similar study conducted by British researchers that reported ALS also occured in their soldiers who served thousands of miles away and that some never even saw battle? There were nearly 120,000 British and American soldiers participating in the 1990-1991 year of the first Gulf War. After the war these servicemen had two relevant nervous system disorders, the Gulf War syndrome and ALS (amyotrophic lateral sclerosis). This study published in the Nov. 26, 2002 edition of Neurology, found that like their American counterparts, many of the 50,000 British soldiers who served in operations Desert Storm and Desert Shield report a higher rate of distinct symptoms that occurred within months of their return from active duty.

http://www.citlink.net/~bhima/gulfwarsyndrom.htm

How naive of us to think the VA Registry was going to operate indefinitely but wait, we're still at war. In fact, this is the fifth year of the Iraq War. In fact, it is the 1,828th day since Mission Accomplished.
March 2007, Tom Mikolajcik, a retired Air Force general and former commander of the Charleston Air Force Base, testified before the House Committee on Veteran's Affairs. Mikolajcik was diagnosed with Lou Gehrig's disease five years ago.

He said, "We are currently exposing 100’s of thousands more service members to the elevated risk of this disease. There will be young men, women, and families celebrating a return from Iraq and Afghanistan alive, who have no idea that they may soon be facing a certain death from ALS. We will have to answer those families when they ask what the government has been doing to prepare for this onslaught. For this reason, the government is compelled to assume leadership of this issue."

"If these soldiers were dying in the field …. rather than quietly at home as a consequence of their service, we would leave no stone unturned. We would use the best existing resources and programs to make sure they had whatever they needed to survive….to ensure that no man or woman is left behind."
Recently, Dr. James Peake, secretary of Veterans Affairs, visited Charleston S.C. to meet with Tom Mikolajcik. The retired general urged Peake to grant all veterans with ALS a service-connected disability. Currently only Gulf War veterans are covered, Mikolajcik said. "My comrades in arms don't get the same benefits, and it's not fair," he said. For unknown reasons, veterans have a 60 percent higher chance of developing ALS. The retired general described the meeting as "very personable." In closing, he said "Now we just wait and pray."