Above and Beyond

 While Lou Gehrig may be the most famous person with ALS to display remarkable courage and dignity, he is certainly not alone. Every day thousands of PALS from every corner of the world are working hard to make a difference in the ALS community.

Our new series entitled, “Above and Beyond,” is dedicated to highlighting the lives of these selfless individuals each week in the pages of the RASCALS Foundation website.

It is celebration of the tireless commitment shown to families, friends, and often total strangers.

It is a demonstration of the big hearts driving big efforts on behalf of every person — past and present — who has ever been touched by ALS.

We hope you’ll join us regularly for this well-deserved series. And if you know someone who we should all know about, please contact us here at the RASCALS Foundation.

The material presented here is for informational purposes only and should not be construed as medical advice, or relied upon as a substitute for medical advice from a health care provider.

Above & Beyond:

O.J. Brigance Inspires Ravens as He Battles Lou Gehrig’s Disease

   Posted by  Site Administrator  on    February 3, 2013      | Edit

By Bob Glauber, originally publsihed ay Newsday.com

OWINGS MILLS, Maryland, January 25, 2013 — It started with a tingling sensation in his right arm.

O.J. Brigance was playing racquetball at the Ravens’ training facility in the fall of 2007, and he didn’t really think too much of it. He had experienced physical symptoms far worse and far more troubling when he played linebacker for the Ravens, Rams and Dolphins. So he figured he’d give it a few days’ rest and let the problem clear up on its own.

But it never did.

After several more days of tingling and numbness, and at the urging of his wife, Chanda, Brigance saw a doctor. He then was referred to other neurological specialists — four in all — and each came up with the same shocking diagnosis.

Brigance had amyotrophic lateral sclerosis (ALS), a fatal illness commonly referred to as Lou Gehrig’s disease. Doctors said he had three to five years to live.

Last Sunday, more than five years after being diagnosed, Brigance sat in his wheelchair inside the Ravens’ locker room after they defeated the Patriots, 28-13, in the AFC Championship Game. Then he presented the team the Lamar Hunt Trophy.

OJBrigance

Former Baltimore Ravens player O.J. Brigance, center, his wife Chanda, left, and former Olympic swimmer Michael Phelps, second from right, visit the Ravens locker room after the AFC Championship game against the New England Patriots in Foxborough, Massa chusetts., January 20, 2013 (Photo credit: AP)

No longer able to speak and requiring the use of a ventilator to breathe, Brigance said through a computerized device he uses to communicate, “Congratulations to the Baltimore Ravens. Your resiliency has outlasted your adversity. You are AFC champions. You are my mighty men. With God, all things are possible.”

Afterward, Ravens players and coaches yelled Brigance’s nickname: “Juuuuuuuuuuiiiice!!” He then received their embraces, having reached a part of every member of the organization through his courageous battle.

“O.J.’s been our strength,” said Ravens safety Ed Reed, who presented Brigance the game ball. “O.J. took me under his wing when I first got here and everything he’s been through and is going through, to still be the same O.J. and being a light to you and being a light for our team. He’s been like an uncle to me and like a brother. I love Juice.”

“Every day I came out and told O.J. that you’re my greatest motivation,” said linebacker Ray Lewis, who will be playing his final NFL game next Sunday in Super Bowl XLVII against the 49ers.

Brigance, 43, was one of Lewis’ teammates when the Ravens beat the Giants in Super Bowl XXXV in Tampa and now is the team’s senior adviser to player development, a position he has held since 2004.

Brigance continues to work full-time, regularly interacting with players, coaches and team officials. Not a single member of the organization hasn’t been touched in some way by the former linebacker and special-teams ace.

“Our strength is made perfect in our greatest weakness,” coach John Harbaugh said. “And here O.J. is, visibly in a weakened physical state yet in an incredibly strong spiritual and intellectual place, and he shows that every day. He’s just a shining light in the building, and we all definitely are energized by that.”

But ask Brigance, and he will tell you that it is the other way around. That it is those around him who give him the will to live.

The journey

Sitting in his office Thursday at the team’s training complex in suburban Baltimore, Brigance talked about how uplifting the team has been through his ordeal. Through the steady hum of his ventilator, his hands are motionless on his lap but his eyes and lips still are able to move, and Brigance explains.

“This Ravens Super Bowl run has showed me that if you continue to strive for a singular goal with one unified soul, you can accomplish great feats,” he said. “There will always be critics to try to defeat your dreams. Don’t use them as haters, but stimulators. Super Bowl XLVII means so much to me, not because of the game. It’s the journey it took to get here.

“The journey is where personal growth and maturation comes, and of the stories of the men on this team,” he said. “They have all overcome challenges and adversities to be on this national stage. It makes me extremely proud of them.”

ALS has robbed Brigance of the ability to speak, and he no longer can move his extremities, but his mental and intellectual capacities have not diminished. All he can do physically is blink his eyes and move his lips. And as anyone who knows Brigance will tell you, his smile can light up a room.

Brigance communicates through a computer, made by DynaVox, programmed to type in letters and words by receiving cues from his eyes. Brigance looks to each letter or word on the keyboard, then enters them into the computer. He instructs the computer with his eyes to play his pre-written answer. It often takes him several minutes to compose a single sentence. For this interview, Brigance received the questions hours in advance.

Brigance has been an inspiration to the Ravens. Players. Coaches. Administrators. They all speak fondly — lovingly — of him.

Asked about his role as an inspiration to the players and coaches, Brigance tells you it’s actually the other way around.

“The truth of the matter is those men inspire me,” he said. “They have helped give me a reason to get up out of the bed every morning. There is a Biblical proverb that says, ‘As iron sharpens iron, so does one man sharpen another. We are making each other better men.”

Ravens public relations executive Patrick Gleason said Brigance gets to know every person in the organization; in fact, when Gleason was an intern with the organization in 2005, he was struck by how caring a person Brigance was.

“Here I was this intern and he asked my name — made sure to know my name — and got to know me,” Gleason said. “To see him now, the guy comes to work every single day. It’s amazing, really.”

“Juice, that’s my man,” wide receiver Jacoby Jones said. “He’s like another Ray Lewis. He gives us inspiration every time you see him. That’s just all love. We love Juice.”

Brigance — Juice — feels the love. And feeds off it.

“When people say I inspire them, it encourages me to continue to persevere through this light and momentary trouble,” he says.

Yes, he refers to his life-altering situation as “light and momentary.”

“I realize that what I am enduring now is not only for my development but to also be able to help those dealing with the same issues,” he said. “I am blessed to have the opportunity to serve God in this current state.”

Hope and faith

Brigance does not worry about how much longer he has to live. In fact, he continues to believe that he will be able to overcome ALS despite the fact that there is no known cure.

According to the ALS Association, approximately 5,600 people in the United States are diagnosed with ALS each year. It is estimated that as many as 30,000 may have the disease at any given time. Life expectancy for most ALS patients is between two and five years from the time of diagnosis, according to the association, but about 20 percent of people with ALS live five years or more. Up to 10 percent will survive more than 10 years, and five percent will live 20 years. It is estimated that more than 5,000 people die from the disease every year.

Recent medical research suggests a potential link between playing football and ALS, although the science is not yet a conclusive association between repeated head trauma and the disease. A study published in the journal “Neurology” last September by the National Institute for Occupational Safety and Health (NIOSH) found that NFL players may be at a higher risk of death associated with Alzheimer’s, Parkinson’s disease, ALS and other impairments of the brain and nervous system than the general U.S. population.

“I don’t know what caused my ALS,” Brigance said. “My focus is how do we end ALS and how do we improve the quality of life for us all in the meantime.”

Soon after he was diagnosed with the disease, Brigance set up an organization called the Brigance Brigade (BriganceBrigade.org) to help others suffering with the disease. “We came up with the vision of this because we realized so many others are going through it,” said Chanda Brigance, who has been married to O.J. for 23 years. The couple met at Rice University, where Brigance was a standout linebacker.

“It’s very expensive as far as all the equipment that’s needed. We understand we’ve been blessed to get help, but we said, ‘Hey, how about helping and supporting others who are living with ALS to give them resources to help purchase equipment.’ ”

Chanda is continually inspired as she watches her husband battle his disease with such strength. But she is not surprised, not after seeing what his reaction was after learning of his illness.

“As anyone would react with a life-threatening disease, you spend your time as in a little bit of sadness,” she said. “You roll on the floor, you cry your tears and say, ‘Oh, my gosh, what am I gonna do?’ But then you dry ‘em up, you stand up, you dust yourself off and say, ‘OK, how are we going to deal with this? You want to fight? You want a challenge? We’re going to give you one, and we’re going to take your head off.’ ”

She learned something else from her husband’s ordeal, too. She learned about herself.

“What I learned about myself is how strong I am and how much I will push things to make them right,” she said. “I’ve learned about patience, because you really have to develop that with this. I’ve learned that I was raised well. My mom raised me not to be lazy and to take care of what’s mine. He’s my husband, so I want to provide a good home for him, take care of him, make sure he’s safe.

“I was raised with good morals,” she said. “Good character was instilled in me to get through this walk. If I didn’t have that, I think like some other people, I would have bailed out a long time ago. I didn’t because that strength was in me already.”

Qadry Ismail has known Brigance since 1997, when the two were teammates in Miami. They also played for the Ravens’ 2000 Super Bowl championship team. The man Ismail knew then is the same as the one he knows now, even with Brigance’s physical limitations.

“What I noticed right away when I first met O.J. at a Bible study group when I was with the Dolphins was his ability to love on you, to respect you, to talk to you in a way that wasn’t preachy, that wasn’t judgmental,” said Ismail, now a commentator on Ravens radio broadcasts. During an interview, Ismail had to pause several seconds because he had become so emotional talking about Brigance.

“What struck me was how uplifting O.J. was,” he said. “You could tell he wants to help be better men. I thought right away, ‘That dude is special.’ ”

And funny, too. Like the time at Super Bowl Media Day 12 years ago, when the Ravens were in the locker room after the interview session was over. Players were imitating Ray Lewis’ “Squirrel Dance” that he does when he comes out of the tunnel for pregame introductions. Brigance was urged to do his version but initially declined. At the urging of several teammates, he finally relented.

“He says, ‘I’m not doing it,’ and then he turned around and did a spot-on Ray Lewis dance, just nailed it,” Ismail said. “The locker room erupted. Juuuuuuuiiiiiice!” Ismail remembers Brigance as a terrific player, too, a special-teams standout who had a broad understanding of the game and who used his unique blend of strength and intellect to fashion a solid professional career.

A three-year starter at Rice from 1988-90, Brigance went undrafted in 1991 and decided to play in the CFL. He started out in 1991 with the British Columbia Lions, where he played for three seasons. He then played for the Baltimore Stallions the next two seasons, making the league’s All-Star team in 1995 with seven sacks. He was a key contributor on the Stallions’ Grey Cup championship team in 1995, the team’s final season in Baltimore before it moved to Montreal.

As a free agent, Brigance signed the next year with the Dolphins and spent four seasons there on special teams. He immediately drew the respect of his coaches and teammates, was voted a team captain twice and won the Ed Block Courage Award in 1999.

A year later, Brigance joined the Ravens and soon became one of their top special-teams players, finishing with 25 tackles in the regular season and making 10 special-teams tackles in the Ravens’ run to the Super Bowl XXXV title. He made it to the Super Bowl again the following year with the Rams, who lost to the Patriots in Super Bowl XXXVI. Brigance played one more season with the Rams.

“As a player, that dude was hard-nosed,” Ismail said. “I was watching the Super Bowl [XXXV] a while ago and he was in on almost every special-teams tackle. He knew his stuff, the details of special teams. People don’t realize there’s an art to playing special teams. He knew the game and he played it well.”

Brigance left the NFL after the 2002 season and rejoined the Ravens two years later, serving as director of player programs. Ever since, he has been a sounding board for current and former players, helping them with any number of issues they confront in dealing with career and family issues.

Ismail said Brigance has a unique way of helping people despite his illness.

“It’s wonderful to see how he’s been able to motivate men and still inspire a ton of men in that Ravens locker room,” Ismail said. “I love how the organization as a whole didn’t look at the disease that stripped him but rather at the mind. They saw what I saw, what all these other men saw. It’s the same man of character I first met at that Bible study in Miami, just as consistent as can be. I love him for it. I really do.”

On a mission

While in New Orleans this week, Brigance hopes to meet with another former NFL player suffering from ALS. Former Saints special-teams standout Steve Gleason, whose blocked punt on the night the New Orleans Superdome opened for the first time after Hurricane Katrina was one of the most memorable plays in team history, was diagnosed with the disease in 2011.

Gleason has coined the saying “no white flags” as a way of persevering against the disease.

“Steve Gleason is my fellow warrior, and I love him for that,” Brigance said. “He gets and understands the vision. As he would say, ‘No white flags.’ Steve understands there is purpose behind the pain, and he is all in. He understands the impact we can make, and I look forward to joining him in New Orleans to crush ALS.”

Gleason, who has relied heavily on Brigance’s advice, also is anxious for the get-together.

“I regularly lean on [Brigance] for advice on topics like wheelchairs, diet, maintenance and therapy,” said Gleason, 35, who also communicates through the DynaVox device. His responses to questions were emailed to Newsday.

Gleason is committed to raising ALS awareness, and uses his website — TeamGleason.org — to spread the word.

“ALS is a terminal disease that prevents your brain from communicating with your muscles,” he said. “It leads to paralysis and death. I have it. You have not heard much about ALS because it is under-funded and under-resourced. As a result, most patients are forced to fade quietly and die. O.J. and I and, really, the entire current generation of ALS patients are on a mission to change that.”

Gleason isn’t sure if football caused him to get ALS, but his main focus is finding a cure and advocating for other ALS patients. “Although recent studies show a higher incidence of brain disease in NFL players, our best scientists are still unable to determine what causes ALS,” he said. “I think O.J. and I are focusing our efforts on finding solutions. We are trying to use our platform to find solutions for the thousands of people who never played in the NFL who die every year from ALS.”

Brigance would like nothing more than to see the disease eradicated, and he hopes to partner with Gleason and spread the message.

In the meantime, there is one more piece of football business ahead in New Orleans for the Ravens’ inspirational leader. Does he believe the Ravens have what it takes to beat the 49ers?

No words are necessary for this one.

His smile says all you need to know.

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_______________________________——————————————pp# # #

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is a 501(c)(3) public charity.

100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is a 501(c)(3) public charity.

100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

 # # #

Above & Beyond:

Sarah Farrell: Veterans fight a battle against Lou Gehrig`s disease

Originally posted at The Morning Call, Easton Area News

“Do you want to hear about my adventure yesterday?” my dad says to me on the phone.

“Oh man, what adventure?” I say.

“Well, the other day I was Superman. I got out of the shower and realized I couldn’t dry my back.” He pauses and laughs. “So I bent low and I threw the towel over my shoulder and used my cape.”

I can hear the smile in his voice as he retells this daily undertaking, similar to other stories I have heard about flying monkeys, Rin Tin Tin, and the boa constrictor, car-vacuum hose.

I am 27-year-old teacher, and I am also an advocate for my dad, Don Farrell. He was diagnosed last year with Lou Gehrig’s disease. Once an avid singer and active community member, he is losing the ability to walk, talk, eat and be independent at the age of 52. He can no longer keep up with his needed housework or complete simple tasks that many of us take for granted. He has retired early from his career in Harrisburg to his home in Mount Joy, Lancaster County.

Since my dad is limited in his daily experiences, he now spends his time writing a book to share his philosophies about love and finding meaning in life. It helps him cope with the hardships, which truly are brought upon all of us in different forms. He finds support with his wife, Joan, who slowly assimilates into a caretaker role. My dad will lose his life sooner than he planned; he will not be able to walk me down the aisle one day or enjoy his retirement. Much has changed for his path; in the meantime, he will need many services and accommodations to be comfortable.

My father served in the Air Force from 1979-1984 and trained as a bioenvironmental engineering specialist. This is where he met my mother and started my family. Today, on Veterans Day, I think it’s important to not only thank veterans, like my father, for their service, but also become aware about a problem that affects many of them after their service is over.

Research indicates that those who served in the military are twice as likely to have Lou Gehrig’s disease (Amyotrophic Lateral Sclerosis), which is a degeneration of motor cells in the brain and spinal cord, leading to muscle weakness and, as the disease progresses, severe impairment of mobility, speech, swallowing and respiratory function. Patients lose muscle mass, mobility and independence. This is the disease that affects my family and many others who are strengthening relationships while treasuring their last moments with their loved ones.

Recently in the media nationwide, we have seen stories about football players, such as former New Orleans Saints safety Steve Gleason, who are diagnosed with ALS, and its damaging effects. It’s important that we recognize, commune and begin to find a cure for this disease, but not only when it affects highly paid athletes.

Veterans Day is the perfect time to bring to the forefront our everyday superstars who need our support: our war heroes and military personnel who sacrificed very much during times of peace and conflict. Researchers have not yet found a cure or treatment for this cruel disease, and the average patient will die between two and five years after diagnosis.

I write because raising awareness of the risk faced by our veterans is important to our community. Veterans need to know that Veterans Affairs benefits are available through the government and assistance can be provided through the ALS Association, which has a local chapter in the Philadelphia area. Furthermore, our society needs to be unified and contribute resources to help find a cure for this underfunded triggerman.

My father has remained very positive and inspiring as he loses so much that he has built his life upon. He and I have raised money by walking together with friends and family to help realize a world without this unnecessary hardship. I challenge you to visit http://www.alsa.org to view photos and read biographies of military men and women who battle ALS and to educate yourself and support this degenerative disease. ALS can strike anyone — from athletes to soldiers to someone in your family. What will you do to honor veterans today? Will you make a difference?

Sarah Farrell lives in Wilson.

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The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity. 100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

You may also be interested in visiting the RASCALS Store.

The material presented here is for informational purposes only and should not be construed as medical advice, or relied upon as a substitute for medical advice from a health care provider.

Above & Beyond:

 An Exhibition of Big Heart, Big Art and Francis Tsai`s Big Toe

At one time or another, we’ve all heard a story about a guy who had ‘more talent in his big toe’ than we have in our entire bodies (or something to that effect). Well, here’s the real deal. Check out the remarkable talent  — and remarkable attitude — of Francis Tsai. (h/t to the folks at Robot 6)

Illustrator Francis Tsai was diagnosed with ALS (Lou Gehrig’s Disease) a couple of years ago, but that hasn’t stopped him from creating art. He explains how he does it in an amazingly upbeat letter he recently sent to friends and fans:

As some of you know, I was diagnosed with ALS (Lou Gehrig’s Disease) back in 2010. This is a fatal degenerative nerve disease with no known cause or cure. It affects people in different ways but typically ends in total paralysis and death due to respiratory failure, unless you undergo some invasive body modification procedures to help prevent that. Being an illustrator/concept artist, naturally it took my arms and hands first. I haven’t held a pencil since early 2011. Bummer, but I discovered I could use an iPhone with my toes. I figured out how to use the Brushes app and made a handful of paintings. My toes have since lost the dexterity for that, so I’ve started using eye-gaze controlled technology to type and hopefully paint.

To help generate some income while I wait for science to get its stuff together, my awesome sister Marice has put together an online shop featuring some of my artwork. Please consider picking up some cool Tsai swag and sharing this post!

Thanks,

Francis

These are all available as magnets for $3 each (plus shipping) and Tsai also has a set of four for $10. There’s also work from earlier in his career, available on T-shirts, travel mugs, water bottles, and iPhone cases.

Very cool stuff. Get some.

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The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity. 100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

You may also be interested in visiting the RASCALS Store.

Above & Beyond:

 Dallas scientist is ‘own experiment’ in ALS fight

DALLAS (AP), September 25 — Here’s how this is supposed to work: Things happen and science explains why.

But sometimes things happen that science can’t explain. And serendipity leads the way.

It’s when someone like Dallas scientist Tony Wood, struck with a fatal disease, finds himself unwittingly offering hope for his own despair.

For years, Wood put his tinkering, connect-the-dots mind to work for companies like Texas Instruments, filing dozens of patents and focusing on improving conditions for the less fortunate.

Fifteen years ago, he co-created technology to help grow plants in water that more recently has shown surprising, if mysterious, promise in treatment of neuro-inflammatory diseases such as muscular dystrophy, Parkinson’s and asthma.

This past year, safety studies were being conducted to pave the way for medical use of his device when Wood found himself struggling to shuffle cards or use the TV remote. Within months, he found he had ALS, or Lou Gehrig’s disease.

The disease has progressed unmercifully fast. Wood, 69, cannot lift his arms or move his legs. He can barely speak and uses his chin to operate his wheelchair. So discouraged by the disease’s rapid effects and his inability to tinker anymore, he was ready to give up.

Then he realized that ALS was among the set of diseases for which the oxygen-infused saline created by his technology could be potentially revolutionary.

He felt he had reason to live again.

With the Food and Drug Administration’s approval, he’s volunteered to be his own guinea pig. He’s now a one-man research trial, working with a UT Southwestern Medical Center neurologist and a product he himself made possible.

As he puts it: “I am my own experiment.”

In the late 1990s, Wood was in his garage, trying to find ways to rapidly fold gases into liquids. Though he didn’t yet realize it, the machine he would devise marshaled the forces of “nanobubbles,” microscopic bubbles that science says shouldn’t exist. And yet, somehow they do.

Plant growth was already accelerated in hydroponic environments. What if you could infuse that water with oxygen? What could that do for food production in remote Third World communities?

He and engineer Norm Wooten devised a prototype, and the so-called “food machine” is now at work in Cambodia.

“I certainly did not start out wanting to find a nanobubble,” Wood said. “All I wanted to do was put more oxygen in the water.”

But in time, others considered the technology’s potential medical uses; in 2007, Stanford University researchers showed that oxygen-infused saline could produce steroid-like anti-inflammatory results.

Pursuing failure might seem futile to some. But for a man who is now a lab rat for his own invention, an invention based on a phenomenon that scientists say shouldn’t exist — well, maybe that’s more like faith.

The experience, Wood said, has given him a deeper spiritual understanding of himself.

“I am much more than flesh and bones,” he has written. “I am an active, participating human, aware of being in service to others.”

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The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3)charity. 100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

You may also be interested in visiting the RASCALS Store.

The material presented here is for informational purposes only and should not be construed as medical advice, or relied upon as a substitute for medical advice from a health care provider.

Above & Beyond:

One Mile At A Time

ALS patient travels cross country to raise awareness

by Natalie Swaby for KING 5 News at NWCN.com, posted September 23, 2012.

KENT, Wash. — At the KOA Campgrounds in Kent, one RV stood out this weekend.

“I really noticed it because of all the writing, mostly,” said Donna Drucker.

The RV is covered in hand-painted, bright purple quotes. Inside we found a couple on a mission to spread their message about ALS, better known as Lou Gehrig’s Disease.

John Mower and his wife Robin live in Toledo, Ohio. Their connection with ALS is personal. Robin was diagnosed in 2009.

Robin and John Mower — and their “inspiration mobile.”

Robin said the worst part was “knowing I was going to die sooner than later.”

The thought of death consumed her at first. But she found a family within the ALS community. As she and her husband attended more charity walks and advocacy days, she made friends. One of those friends passed away a couple weeks ago due to complications from ALS.

“He is a true hero,” said Robin with tears in her eyes. “We will find a cure. He will not die in vain.”

One day after Robin found out about her friend’s death, she decided that it was time to fight. Her husband turned their RV into an “inspiration mobile.” With help from family, messages like, “Living not Dying” and “Never Give Up” were painted on all sides of the vehicle.

The couple is traveling city to city, attending ALS walks and raising money. They want to donate to ALS research for a cure. The participated in a walk in Seattle on Saturday.

Learn more about Robin’s journey and the Mower’s fundraising efforts.

 

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The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3)charity. 100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

You may also be interested in visiting the RASCALS Store.

The material presented here is for informational purposes only and should not be construed as medical advice, or relied upon as a substitute for medical advice from a health care provider.

 

 

Above & Beyond:

 Seckman Schools Show True Team Spirit for ALS and RASCALS Foundation

IMPERIAL, Mo., September 24, 2012 — The RASCALS Foundation was invited recently to discuss ALS (amyotrophic lateral sclerosis) with the Seckman High School cheerleading squads. The school’s varsity football team had been planning a Friday night ALS fundraiser, but Cheerleader Coach Valleri Wingbermuehle wanted her girls to have knowledge about ALS, and not just going through the motions.

Robert Stehlin, RASCALS’ founder and president, made the visit to the school, accompanied by his wife, Laura, and their sons, Aidan (5) and Bobby (13), a student at Seckman Middle School. Diagnosed in September of 2009, Mr. Stehlin  provided an instructive overview on ALS, more commonly known as Lou Gehrig’s disease. He also spoke to the students about the personal impact from a patient perspective.

“They thanked me for coming, but all the thanks really goes to the coaches and squads for taking the time to learn about ALS,” said Mr. Stehlin. “It’s incredibly important because we still struggle with awareness of the disease. So we’re extremely grateful for these opportunities to spread the message, and I just want to say ‘thank you’ on behalf of the entire St. Louis-area ALS community.”

RASCALS founder Robert Stehlin discusses ALS with the Seckman Jaguars cheerleading squad.

Following the orientation, the girls were named official ‘Foundation Ambassadors’ and awarded the RASCALS’ familiar light blue ALS wristbands.

Return Engagement

Reports of the educational session proved so positive that Mr. Stehlin and the RASCALS were invited back to discuss ALS with the Character Council at the Seckman Middle School. Teachers Susan Casey and Angie Moore felt it would be a great opportunity for the Council, since part of their study focuses on working with charities.

“It’s been a genuine honor to be able to share and work with these amazing young people. I truly mean that. The whole experience has been inspiring for me to see their interest and feel this support,” said Mr. Stehlin, reflecting on his visits. “It gives me hope, and not just as an ALS survivor, but also as their neighbor, as part of this community.”

RASCALS Founder and President Robert Stehlin poses with his newest Foundation Ambassadors, the Seckman Middle School Character Council.

Each of the Character Council members were also bestowed the title of Foundation Ambassador and asked to participate in raising awareness for ALS. “I’m extremely proud to be associated with this great group of students, and of course, the teachers and coaches that made it all possible,” said Mr. Stehlin. “Seckman rocks.”

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The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3)charity. 100% of all funds raised go to building awareness, treatment research and development, plus ALS family assistance. There are no administrative costs.

Contributions are tax-deductible.

You may also be interested in visiting the RASCALS Store.

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Above & Beyond:

 An Act of Valor

RASCALS note: Whether you agree or disagree with Eric Valor’s approach, you have to respect him for his commitment and courage. In fact, the name Valor suits him perfectly.

Lou Gehrig’s Disease: Patients Take Research Into Their Own Hands

By @katiemoisse, originally posted online at ABC News, April 18, 2012.

Though his body betrays him, Eric Valor’s mind is still strong. Diagnosed with Lou Gehrig’s disease in 2004, the 43-year-old relies on machines to move, talk, eat and breathe. But that hasn’t stopped him from running his own drug trial.

With help, Valor has been injecting sodium chlorite, a chemical used by water treatment plants, into his paralyzed body through a feeding tube. He’s convinced it’s the active ingredient in NP001, an experimental drug made by Neuraltus Pharmaceuticals Inc. And other patients are following his lead.

“My original plan was to keep it secret until I could report with confidence that it was safe and even marginally effective,” said Valor, who started taking sodium chlorite in October 2011. “But the secret got out, so I made a website to try to capture data as best I could.”

From a special bed in his Santa Cruz, Calif. home, Valor uses his eyes to control a ceiling-mounted computer — a design from his days as a computer specialist. He carefully tracks his disease progression and that of more than two dozen other patients taking sodium chlorite with hopes the makeshift drug will buy them all time until NP001, if proven to work, is approved by the U.S. Food and Drug Administration.

Eric Valor hopes sodium chlorite will slow the progression of Lou Gehrig’s disease. (Courtesy Eric Valor)

But experts say the DIY approach is dangerous.

“It’s pretty frightening,” said Dr. Jonathan Glass, neurologist and director of the Emory ALS Center in Atlanta, Ga. “I think it’s a cry of desperation for these folks, using something not made to strict standards with no evidence it works.”

But people with Lou Gehrig’s disease, also known as ALS, are eager to find out whether sodium chlorite works quickly and on their own terms. Frustrated with the pace of clinical research, they’ve joined forces to tackle the best leads on short order, from off-label drugs to stem cell transplants, and now makeshift NP001. It’s a far cry from a properly designed clinical trial, which has a control group to weed out the infamous placebo effect. Still, the DIY design puts patients back in control.

“I don’t think anyone should interfere with a patient’s right to choose their own destiny,” said Jamie Heywood, co-founder of PatientsLikeMe, an online community where patients share their experiences with various treatments, including sodium chlorite. “I look at it from a sort of human rights level, the right to life, liberty and the pursuit of happiness. It’s not the right to succeed; it’s the right to pursue.”

Heywood’s brother, Stephen, died from ALS in 2006. He was 37.

“We did a stem cell transplant in Stephen, based on data from Parkinson’s rats,” said Heywood. “It was an intuitive lead. And in our mind, it was worth doing.”

But sodium chlorite takes intuition to a new level. Research papers and patent filings suggest the vaguely-named NP001 could be sodium chlorite, but Neuraltus Pharmaceuticals Inc. has not publicly confirmed the drug’s formula. Calls to the company were not immediately returned.

The results of a phase 2 clinical trial of NP001 are expected to come out later this year.

Makeshift Treatments: Too Much Information?

The DIY sodium chlorite trial reflects the shortage of effective treatments amidst a sea of promising preliminary data, data once buried in subscription-only medical journals that can now be found online.

“We have more information now but we don’t know what it means,” said Heywood. “Broad access to this kind of information, and a lack of control over how people use it, will likely result in a death. Someone’s going to die making a mistake because information’s coming in fast and we don’t have the tools to understand it yet.”

Patients often are desperate to slow the relentless disease, which usually kills in five years or less.

But Valor said desperation is best left out of treatment decisions.

Desperation leads to irrational thought and irrational thought leads to irrational action,” said Valor, adding that people with ALS often fall victim to snake oil salesmen and scams.

“Desperate people are prime targets for the unscrupulous,” he said. “This was one of the reasons for the creation of the FDA and the requirements for companies to prove safety and efficacy before allowing sales to the public. Unfortunately, not all bureaucracy is well-suited to all situations, and people with ALS do not have a lot of time.”

Valor said patients should research treatments thoroughly by reading studies and talking to experts, including their own doctors. And to those who think they have nothing to lose, Valor says think again.

“Every day is precious to people with ALS and anything that decreases the number or turns them even more painful or bleak, simply must be avoided,” he said. “Ask the family of any current or deceased person with ALS if they would like even one more bright and happy day together.”

You can contact Eric and access his blog at the website, Friends For Eric.

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