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Altman: SEALs, fundraisers seek cure to Lou Gehrig disease

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Published:   |   Updated: April 20, 2014 at 07:05 PM

A few weeks ago, I was sitting outside the thatched-roof joint operations center otherwise known as Four Green Fields, having a Yuengling with Dan O’Shea, a former Navy SEAL commander. We were talking about plans for fundraising efforts next weekend on behalf of another former SEAL, Gary “Doc” Welt, a master chief stricken with amyotrophic lateral sclerosis, Better known as Lou Gehrig’s disease – after the Yankee first baseman, it is an incurable disorder attacking muscle-controlling nerve cells in the brain, brainstem and spinal cord.

Trying to get some more details, O’Shea punched some numbers into his phone. I couldn’t hear the voice on the other end, but when O’Shea put his hand to his forehead and closed his eyes and cursed, I knew what had happened.

Earlier that day, Welt succumbed to an implacable foe.

He was 55.

It was an eerie and difficult moment, but as two men used to dealing with grief and tragedy, we quickly came to the conclusion that Welt’s death would not stop the fundraisers.

“We will run to the sound of the guns and attack this with all professional violence of action,” Welt told me last year when I met him at the annual Greater Tampa Bay Walk to Defeat ALS.

Welt, who was still well enough to be outside, albeit requiring a motorized wheelchair to get around, said he was on a new special operations mission.

To find a cure for the disease that has robbed him of his mobility. To raise awareness of the signs and symptoms and money to find a cure. And to find out why those who have served in the military are two times more likely to contract ALS than civilians.

Welt, who retired as a master chief, spent 16 years as a medic and told me he wanted to put that experience to work helping find out why service members are at such a greater risk of dying from ALS.

“We can be where it’s 40 degrees below zero or 130 degrees,” he surmised. “We are under all kinds of stress. Maybe that’s why.”

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The Pentagon doesn’t know exactly what is causing ALS, but thinks there may be a service connection given the statistics. Earlier this month it issued a $2.5 million grant to the Cedars-Sinai Regenerative Medicine Institute in Los Angeles as part of its ongoing effort to find a cure for a disease that has afflicted about 30,000 in the United States, with about 5,600 new cases reported annually.

“Men and women who have served in the U.S. military are 50 percent more likely than civilians to develop ALS,” says Melissa Forsythe, program manager of the Pentagon’s ALS Research Program. “The risk was higher among those serving in Army, Navy, Air Force, and Coast Guard, but not in the Marines. In addition, 1990–91 Gulf War veterans have been shown to be twice as likely to develop ALS as the general population. Although the association of multiple environmental factors and development of ALS in service members has been investigated, the causative factors remain unknown.”

Like Doc Welt, those who contract ALS don’t have long to live, increasing the urgency and difficulty of studies, says Forsythe.

“Due to the very short trajectory of life span after diagnosis, the accumulation of case study and basic research in ALS patients is difficult to obtain,” she said. “However, the Centers for Disease Control has recently begun the National ALS Registry, a program to collect, manage, and analyze data about people with ALS.”

The Pentagon ALS Research Program has received nearly $50 million since 2007, according to the program website, and developed the Therapeutic Development Awards to “stimulate the development of new treatments for ALS since currently there are no therapies to halt the progression of the disease,” according to Forsythe.

Cedars-Sinai Regenerative Medicine Institute Therapeutic Development Award application indicated prior early results with a potential to halt disease progression and thus become an important ALS treatment, said Forsythe.

The treatment centers on a protein, GDNF, that promotes the survival of neurons, according to Cedars-Sinai.

The Cedars-Sinai study, led by Clive Svendsen, Ph.D., professor and director of the Regenerative Medicine Institute at Cedars-Sinai Medical Center, and Geneviève Gowing, Ph.D., a senior scientist in his laboratory, also will involve a research team at the University of Wisconsin, Madison and a Netherlands-based biotechnology company, uniQure, that has extensive experience in human gene therapy research and development, according to Cedars-Sinai.

The research will be conducted in laboratory rats bred to model a genetic form of ALS. If successful, it could have implications for patients with other types of the disease and could translate into a gene therapy clinical trial for this devastating disease.

The Pentagon recommended funding the grant “to accomplish the necessary preclinical studies in the hope that this research may develop an ALS therapy that will help patients,” Forsythe said.

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On Sept. 12, 2012, Welt got off a ship after working on a counterpiracy patrol as a contractor.

“I was fully capable and able to walk,” said Welt at last year’s ALS Walk.

But Feb. 1, 2013, after experiencing a few months of muscle twitching, weakness in his legs and arms and a loss of grip strength, Welt was told he had ALS.

After surviving the battlefields of Afghanistan and many other parts of the world, Welt talked about facing a so-far unconquerable foe.

“In a word? It sucks,” Welt told me.

Informed that he had between three and five years to live, Welt said he wouldn’t die without a fight.

Doc is gone now, but for those still fighting his battle, it is “Charlie Mike” – continue mission in military speak.

A weekend-long series of events starts 11 a.m. Friday with a memorial service at the U.S. Special Operations Command Memorial at MacDill Air Force Base, says Jon Workman, president and co-founder of the Silver Strand Foundation, a Delaware nonprofit that raises money and awareness for the families of fallen SEALs and SEALs who are transitioning out of the teams and those who may be suffering illnesses such as post traumatic stress disorder and ALS.

Later that night, the Mike Oyer-Doc Welt Hero Workout of the Day, a CrossFit style event, starts 6 p.m. on Sand Key Beach.

“Michael Oyer was a close friend and teammate of Doc Welt,” says Workman. Oyer and Welt “started in BUD/S (Basic Underwater Demolition/SEAL) training class 106 together. Mike graduated with class 106, while Doc graduated with class 109 due to an injury he sustained in class 106,” says Workman. “Mike Oyer died of ALS in August of 2012. It was important to Doc to bring Mike Oyer’s family into the mix while we raise awareness about ALS.”

There is a walk/run event at Walsingham Park in Largo on Saturday morning, says Workman. Registration is at 8 a.m., followed by the walk/run at 9 a.m. That night, there will be a benefit dinner and silent auction at the Sheraton Sand Key Resort.

“We have seating for 200 but we anticipate and hope for a sell-out,” says Workman.

The fundraising weekend closes out Sunday, April 27, with Doc’s Poker Run which starts and finishes at the Quaker Steak & Lube in Clearwater, says Workman. It starts at 10 a.m. and the riders and participants are due back by 2 p.m. he says.

“The after-party will then start at 2 p.m. and conclude at 5 p.m.,” says Workman. “This is a great time for anyone that wants to come out and pay their respects to the family to come on out and join us. Quaker Steak & Lube will be donating 15 percent of food proceeds back to our event as a donation.”

For more information, go to this website, call Workman (302)584-0688 or email silverstrandfoundation501@yahoo.com.

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The Pentagon announced the death of a soldier last week as the result of an attack in Afghanistan.

Spc. Kerry M. G. Danyluk, 27, of Cuero, Texas, died April 15 at Landstuhl Regional Medical Center, Germany, of injuries sustained April 12 when enemy forces attacked his unit with small-arms fire in Pul-e-Alam, Logar province, Afghanistan. He was assigned to the 2nd Battalion, 87th Infantry Regiment, 3rd Brigade Combat Team, 10th Mountain Division, Fort Drum, N.Y.

There have now been 2,304 U.S. service members who have died in support of Operation Enduring Freedom, the nation’s longest war.

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