ALS Awareness
By WMDT STAFF
(MARY SHERWOOD PLANTATION BERLIN, MD -- WMDT) 4/12/2008

Photographer: WMDT Staff


It's a disease that can kill within three to five years.
ALS, or as it's more commonly know, Lou Gehrig's Disease is a neuro-muscular disease that has no know cause or cure.
The illness affects over 5600 people in the United States every year.
April is ALS Awareness Month and here on the shore people are banning together to help raise money to increase awareness and fund research.
All kinds of merchandise was donated by local families and establishments for a silent auction held Saturday at The Mary Sherwood Plantation.
Delegate Jim Mathias was on hand for the event as the auctioneer.
The proceeds from that auction will go towards awareness and help fund research.
This event comes on the heels of a recent, local tragedy.
ALS took the life of a longtime education and former superintendent of the Caesar Rodney School District.
Harold E. Roberts lost his battle with A-L-S on Thursday.
Delaware Governor Ruth Ann Minner has ordered that the first state's flags be flown at half-staff until his funeral.
Roberts served as superintendent for three years before the disease forced him to retire in July.
He was 59 years old.


http://www.wmdt.com/topstory/topstory.asp?id=3360

Hermitage students’ efforts raise $18,156 for Lou Gehrig's disease
Stricken man, father salute kids

By Joe Pinchot
Herald Staff Writer
Published April 13, 2008 09:10 pm -
Hermitage School District students who raised $18,156 to help Stephen Comninos battle Lou Gehrig’s disease received praise from the stricken man and his father.


HERMITAGE —


Anyone who criticizes today’s kids within earshot of John Comninos is bound to get an earful.


The Hermitage man said he’s heard the knock on today’s young people for their supposed self-centeredness and other character deficiencies, but he doesn’t buy it.

“It’s so wonderful, these kids,” he said, specifically referring to the Hermitage School District students who raised $18,156 for his family to help his son, Stephen, battle Lou Gehrig’s disease.

“It’s just a tribute to them, and their parents,” he said. “These kids are really good role models to the younger kids. They sacrificed all this time and effort and they didn’t even know my boy.”

Stephen Comninos, a 2001 Hickory High School graduate, is being treated for amyotrophic lateral sclerosis, a degenerative disease of the brain and spinal cord. His treatment is costly and insurance has not covered the experimental treatment he has been receiving, which costs about $8,000 a month.

The fundraising effort started among teachers, but grew when school board President Victor J. Ellenberger solicited help from the Modern Woodmen of America, who agreed to match up to $2,500 raised.

The goal grew to raising $2,500, and then the project ballooned, said Laura Mount, who advises Hickory’s Students for Charity with Alissa Sgro.

“It took on a life of it’s own,” she said.

Although the Modern Woodmen’s donation proved critical to the success of the campaign, the effort literally showed the impact the smallest of donations can have. The high school ran a penny war that netted about $1,250 in change — half raised in honor of Erika Anne Hirschmann, the 1999 Hickory grad who died March 15 — and Artman Elementary School second-graders contributed $60 through a lemonade sale. Other events included hat day and polar bear walk-a-thon.

Meanwhile, the Shenango Valley Foundation, Sharon, also has been collecting donations. When the Hickory total is added to a $5,000 pledge from the Winner Foundation and donations at the foundation, about $50,000 has been raised so far, said foundation Executive Director Larry Haynes, adding that more donations come in every day.

“It is unreal,” Stephen Comninos responded. “I don’t know what to say. Thank you everybody who supported me.”

John Comninos said the results show what big hearts the residents of the Shenango Valley have.

“Everyone comes together here,” he said.

“When people hear of a good cause, they reach into their wallets,” said Larry Perna of the Modern Woodmen, a fraternal life insurance company. “There’s no limit.”

The Comninos first came to realize the compassion and selflessness of area residents more than two decades ago when people came forward to assist the family in caring for oldest daughter Nicole. She contracted meningitis as a baby and had to be cared for her entire life. She died nine years ago at age 22.

“I am in awe with the response and generosity that the entire community displayed towards me,” Stephen Comninos said in a written statement. “Your compassion is a tribute to the character of our community and makes me proud to be a member of the Shenango Valley.”



http://www.sharonherald.com/local/lo...104211059.html

Ladies and Germs,



It’s here. The day y’all have been waiting for. Yours truly is taking the trip of a lifetime. Man, it has been a hectic last three weeks, watching Glenda run around like a chicken with her head cut off has really been tiring for meJ. Actually, I’ve been conducting interviews and being filmed for TV news. So far I have interviewed with News 13, Channel 9 (an ABC affiliate), WKMG Local 6 (a CBS affiliate) and the Orlando Sentinel…look for that one tomorrow.



So this is the schedule of events. We will get up at 6am (I thought I was done with getting up that early) tomorrow morning. We will take part in the Walk to Defeat ALS in Orlando’s Blue Jacket Park. Around noon I will head out to Washington DC, expecting to arrive on May 9th or 10th, depending on the weather. I will update a blog daily, you can find it at www.rolloverals.org and selecting the daily journal link. You can post to the link too, so if you have any comments or questions, leave them there and I will get back to you as soon as possible. If anyone wants to join me for part of the ride let me know and we will make arrangements.



OK, this is the sappy part. When being interviewed for one of the TV stations they asked me what I wanted to do when I had ALS. I wanted to run and hide from everyone, which is what I did. I probably ran and hid from some very good friends of mine, and for that I apologize. I won’t make any excuses, if you sent me an email and I didn’t answer, send me another one…I will answer it when I get a minute.



Sorry so short, I got another interview at 9:30 with Fox 35. Keep me and my family, including my buddy that just had his dad pass away, in your prayers.



Love y’all



Living despite ALS,

Ken Patterson Sr

kensr@kensjourney.com

http://kensjourney.com

How can we connect the dots if we don't collect the dots?

Lou Gehrig's disease patient takes to D.C

Kate Santich | Sentinel Staff Writer
April 19, 2008
While Ken Patterson still has a voice -- before he is completely bedridden and fed through a tube -- he wants answers.

The former Army sergeant wants to know why those who've served in the military are twice as likely to get Lou Gehrig's disease as those who haven't served. And he wants to know what the politicians controlling research funds are going to do about it.

"They worry more about giving little blue pills [Viagra] to old men than the 30,000-plus people with this disease," said Patterson, 39, of Titusville.

Today, Patterson begins a 940-mile journey from Orlando to Washington in his battery-powered wheelchair. Traveling 50 miles and 10 hours a day -- with his wife, Glenda, trailing him in a van -- he plans to collect letters from other patients and carry them to Capitol Hill, raising awareness along the way.


"Somebody has to do it," he said. "Why not me?"

Patterson has amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease -- a fatal neurological disorder that progressively robs its victims of the ability to walk, speak, move and, eventually, breathe. It leaves a perfectly alert mind in a shell of a body.

Despite numerous studies showing that ALS is more common among veterans and a 5-year-old ALS registry by the Department of Veterans Affairs that now has 1,800 names, funding to unravel the mystery is still meager. This year, the Department of Defense has requested $5 million to study possible treatments.

"We're happy to get it, but $5 million is nothing in the realm of medical research," said Lucie Bruijn, national science director and vice president of the ALS Association. "We can absolutely use more. I think what he [Patterson] is doing is fantastic."


Not 'going to crawl in a hole'

Since his diagnosis with ALS in November 2006, Patterson has had plenty of time to consider potential culprits.

Was it the jet fuel he was exposed to as a paratrooper? Did it have anything to do with being a gunner on an anti-tank missile system? Was it all the vaccines he was given -- as many as a dozen at a time? Or perhaps the exposure came later, in his work as a safety engineer for the Kennedy Space Center.

"You don't have enough space to write all the possibilities," he said, his words already slurred from the disease.

A one-time firefighter and paramedic, Patterson first went to a doctor in late 2005 for what he thought was a bad case of carpal tunnel syndrome. His right hand hurt all the time, and his grip was slipping. He couldn't turn his ignition key without using two hands.

It took three doctors, a gamut of tests and 11 months to get the answer: He had a disease he didn't know anything about and a prognosis of two to five years left to live.

"I got drunk," he said. "I couldn't have what they said. I thought, 'I'm just getting to where I want to be in life. I'm still a young man.' "

Divorced and the father of a son, he had been dating Glenda House for nearly a year. He was about to begin work on his master's degree. And at Kennedy Space Center, he was on track for a big promotion.

In January 2007, Patterson quit work to spend what time he had left with his family, and that spring he drove with Glenda to Washington for an ALS candlelight vigil at the Capitol.

"I didn't see one news reporter, not one cameraman," he said. "Nobody cared about ALS. Somebody had to do something. I wasn't just going to crawl in a hole and die."

He began planning his mission. And in July, he and Glenda, 36, married.


All services susceptible

On the way to Washington, the two plan to stop at Fort Stewart in Georgia and Fort Jackson in South Carolina. They want to tell soldiers there what scientists have learned: that it doesn't matter whether you've been in the Army or Navy, Air Force or Marines. It doesn't matter whether you've ever deployed overseas or fought in combat. Patterson never made it out of Fort Benning, Ga.

Any time in the service raises the risk, though there might be no sign of ALS for years or decades afterward. And for those who fought in the Persian Gulf War of the early 1990s, the risk is higher still. Again, the reason is unknown.

Since the disease was identified in 1869 -- decades before it struck baseball great Lou Gehrig -- the prognosis of two to five years has remained unchanged. And only one drug -- Rilutek -- has been approved by the FDA for treatment. It is thought to extend life by about eight to 12 weeks and costs about $1,000 a month.

"The disease is still a rare one," said Bruijn, a molecular biologist. "It's not as if everyone in the military is suddenly going to get ALS. But the fact that it is increased leads us to the theory that there is some sort of environmental exposure involved, and we need to identify what that might be."

Earlier this year, scientists isolated a gene that causes some forms of ALS, indicating a genetic predisposition.

The most likely scenario, experts say, is that the disease comes from that genetic vulnerability coupled with exposure to an environmental toxin.

Realistically, Ken Patterson probably won't live long enough to find out. But he likes to think otherwise.

"I'm going to stick around another 90 years just to **** the world off," he said.


Kate Santich can be reached at ksantich@orlandosentinel.com or 407-420-5503.


http://www.orlandosentinel.com/orl-a...,7296903.story

Rough riders gather for benefit ride
4/19/2008 4:31 PM
By: News 8 Austin Staff


This was the second year of the annual Max's Ride for ALS research.
Motorcycle riders gathered at Cowboy Harley Davidson in South Austin to ride together in the fight against ALS, commonly known as Lou Gehrig's disease.

This was the second year of the annual Max's Ride for ALS research and Patient Services.

Lou Gehrig's disease is named for the famous baseball player who died from the debilitating condition.

But according to the ride's organizers, ALS is more of a concern for veterans of the Gulf war.

They are twice as likely to develop the disease.


"It's a degenerative neurological disease. We don't know why it happens. We don't know who's at risk for it, but we do know that if you're diagnosed with ALS, two-to-five years later you will probably die of the disease," Patrick Callihan with the ALS Association said.

The ride is named for Max Harrison, who is a Gulf War veteran who died from ALS in 2006.

Before his death, with the help of family and friends, Max organized the ride to raise awareness and money for research and patient services.

http://www.news8austin.com:80/conten...sp?ArID=206237

Waumer Walk '07 1,000 walk with Waumer
Posted By Pete Fisher
Posted 12 hours ago
More than 1,000 participants ensured the success of the sixth annual Waumer Walk for ALS Sunday in Cobourg's Victoria Park.

Although not all the money has been counted, the total was expected to exceed $50,000.

The fundraiser was founded by Cobourg resident Dennis 'Waumer' Wamsley, who was diagnosed about six years ago with amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease.

Mr. Wamsley has always said the money for the fight against ALS is important, but his goal is to raise awareness about the condition to as many people as possible.

ALS is a fatal progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, destroying the motor neurons that control muscle movement.

Participants in Sunday's walk enjoyed a face painting booth, a fishing booth, massages, hot dogs, Tim Hortons coffee and muffins, draws, a visit from the Cobourg Fire Department and Sparky, and more.

Each year, Mr. Wamsley has set a goal for himself of completing the five-kilometre walk. Once again, he did just that.

Canadian Idol judge Zack Werner, who is also the national chair and spokesperson for Walk For ALS, also participated in the Waumer Walk. Mr. Werner lost his father to ALS.

The first Waumer Walk For ALS raised in $38,000 and has raised more each year.

pfisher@northumberlandtoday.com
http://www.northumberlandtoday.com/A....aspx?e=998171

Athletes rally for softball player's mom
Fund drive planned for Fairfield woman diagnosed with Lou Gehrig's disease
BY SUE KIESEWETTER | ENQUIRER CONTRIBUTOR
E-mail | Print | digg us! | del.icio.us! | Click-2-Listen

FAIRFIELD - The area's softball community is rallying around the family of a Fairfield High School softball player whose mother has Lou Gehrig's disease.

Softball teams throughout the Greater Miami Conference - including Lakota West, Mason and Colerain - are pledging some of the proceeds from concession stand sales to help Liza Fox, the mother of Jaisa Fox.

Colerain High School's softball program also has pledged $1 for every strikeout pitcher Emily Schwaeble records this season, said Renee Boswell, a family friend who is organizing a fundraiser to be held for the family tonight.

Since word of the family's situation went out last month, more than $1,800 in donations have come in. And that doesn't include the nearly $400 donated by the Mason High School's Boosters and concession proceeds, coach Brian Gestner said.
"It was an easy decision for us at our end because of the Fox family and our family in the softball world helping each other out,'' Gestner said.

Calls have gone out statewide to softball booster organizations to make donations to the Fox family. An anonymous donor also has pledged to match up to $5,000 in donations made at tonight's fundraiser.

"I am overwhelmed by everyone's kindness and generosity,'' Boswell said.

Liza Fox was diagnosed with the amyotrophic lateral sclerosis - a progressive disease that affects nerve cells in the brain and spinal cord - about 19 months ago.

She has since lost the use of her arms and legs and the ability to speak, Boswell said.

Boswell said the family declined any interviews.

To help the family pay for home nursing care - about $8,500 per month - Boswell and others have organized the benefit set for 7:30-11:30 p.m. today at the Fraternal Order of Police Lodge 38 at Joyce Park, 180 Joe Nuxhall Way. Tickets are $25 at the door.

There will be food, drinks, a disc jockey, auction, themed baskets to raffle off, and a split-the-pot.

http://news.enquirer.com/apps/pbcs.d...403/1056/COL02

__________________

ALS/MND Registry
http://www.patientslikeme.com/registry

Gales, Irish provide plenty of sparks during 'Batting for Ben' benefit
By SEAN GOLDEN
Sports Writer
spgolden@nncogannett.com


LANCASTER - On a day where it was evident that there's plenty more to life than baseball, the events between the lines were pretty entertaining.

Saturday's game was the third and final of the day's benefit tripleheader, staged for former Irish teacher and coach Ben Thimmes, who was diagnosed with Amyotrophic Lateral Sclerosis in June of 2007.




Lancaster began their offensive explosion with just a small spark, but got seven combined runs in back-to-back big innings to top Fisher Catholic 10-5.

"Hitting is contagious," Gales coach Nate Conrad said. "One guy gets going, and then another guy gets going."
After the Irish put two runs on the board thanks to an RBI-double by Matt Slykerman and an RBI-single by Andrew Bowes, Lancaster left four runners on base in its next two at-bats.

An infield single by David Stump to begin the fourth inning looked like it might go to waste after Fisher Catholic starter Pat Saum retired the next two batters.

But things fell apart after that for the Irish, as the Gales strung together a balk and three singles - all with two outs - to score four and take control of the game at 5-2.

"Once you get the lead and start putting guys on base, then you can be a little more aggressive," Conrad said. "You can dictate the pace that the game's going to be played. If we can get to that point, then we're a good team."

In its next at-bat, Lancaster bashed three straight singles, including a two-run knock up the middle by Kyle Studer.

All in all, Lancaster smacked nine hits in the fourth and the fifth inning combined, taking a firm hold on the game's momentum.

Irish coach John Joyce said Saturday's game illustrated a trend he has seen this season with his team.

"All year, our Achilles heel has been not making the play when we need to and not getting the big hit when we need to," Joyce said. "Consequently, it's been the other way around."

Jeremy Joyce came on in relief of Saum in the fifth inning, making a second appearance after starting in a loss to Fairfield Union earlier in the day.

Kyle Studer took a Joyce pitch into center field for a two-run single in the fifth that helped put the game firmly out of reach at 8-2 after five.

Sean Gorby worked out of jams for most of the day on the mound for Lancaster.

Gorby said his solid six-inning outing was not any of his doing.

"The curveball wasn't working well," Gorby said. "I would say it was probably my worst outing of the season."

Centerfielder Donnie Roshon made a running grab to rob Irish slugger Nick Orlando of extra bases in the third inning.

Gorby said plays like that kept him on the mound and in control.

"It was all my defense," Gorby said. "When things aren't working, they do the job."

Andrew Bowes was a bright spot for the Irish, going 3-for-4 and driving in two runs.

"He's on fire right now," John Joyce said. "When he gets into one of those grooves, he can hit the ball like that."

Fisher Catholic added on two more in the seventh, but couldn't muster enough of a rally after loading the bases in its final at-bat.

Saturday's tripleheader involving Lancaster, Fairfield Union and Fisher Catholic was dubbed "Batting for Ben," and Thimmes and his family were introduced prior to the Irish and Gales facing off on the field.

"We're out here as a tribute to Ben," Conrad said. "Ben is always wanting to help everyone out and always positive. I know Ben loved sitting over there and watching it. I'm sure there's nowhere else he'd rather be than out here."



http://www.lancastereaglegazette.com...ORTS/804270301

FAIRFIELD -- A Friday night benefit in Fairfield raised $20,848 for the family of a Fairfield High School softball player whose mother, Liza Fox, is suffering from Lou Gehrig's disease.

Fox was diagnosed 19 months ago with amyotrophic lateral sclerosis, a progressive disease that affects nerve cells in the brain and spinal cord.

The money raised will help pay for home nursing care because Fox has lost the use of her arms and legs and the ability to speak.


Donations are still being accepted, said Renee Boswell, a family friend who organized the benefit.

Checks can be made out to the Liza Fox Benefit Fund, c/o Chase Bank, 5200 Pleasant Ave., Fairfield, OH 45014

Dorothy Drago, 79, of Las Vegas is featured in the Muscular Dystrophy Association's online series "ALS: Anyone's Life Story." Throughout the month of May, the series will feature 31 people who have learned to live with ALS. May is national ALS Awareness Month. To view the online series visit www.als-mda.org/anyone/als_stories.html