Saturday, June 28, 2008

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

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).

Sunday, June 22, 2008

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

Saturday, June 14, 2008

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 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 or 1-877-444-ALSA.

Tuesday, June 10, 2008

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)
Mail: PO Box 1072 -- Lake Oswego OR. 97034-0121

Support Passage of US Senate Bill S.1382, ALS Registry Act

ALS Family Story of Laura Stanley, Corona CA

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:

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