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50/50 Cash Raffle -WIN up to $1 MILLION By Supporting those Battling ALS

50/50 Cash Raffle -WIN up to $1 MILLION By Supporting those Battling ALS | ALS | Scoop.it

Don't miss out on this amazing raffle to help support those battling ALS and potentially win 1.2 million dollars!

Purchase your tickets today for $200 dollars each.

Only 30,000 chances will be sold, so act fast!

*Ticket sales will begin on April 2, 2012 and will be available for purchase through September 27, 2012

*Winners will be drawn at the Les Turner ALS Foundation office in Skokie, IL on November 8, 2012.

If all 30,000 chances are sold, you are eligible to win one of the ten following prizes:

*********1st PRIZE: $ 1 Million Dollars

                  2nd Prize:   $600,000

                 3-5th Prize:  $300,000

                6-10th Prize: $100,000

[T.E.A.M.-Together Everyone Accomplishes More!]

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Susan S. – Scholarship Contest Essay | Mayo Clinic Center For Social Media

Susan S. – Scholarship Contest Essay | Mayo Clinic Center For Social Media | ALS | Scoop.it
Vote/like my ALS essay on social media to send me to the Mayo Clinic Social Media Conference
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What Color is ALS?

What Color is ALS? | ALS | Scoop.it

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Cure for ALS's curator insight, October 29, 4:11 PM

By Karen Duffy, Wednesday, October 29, 2014

 

Every year when the world turns pink I wonder – what color is ALS? Breast cancer is pink. When I see purple I think of Alzheimer’s disease and Crohns disease.  Bright yellow is the color of the Livestrong Foundation which supports people with all types of cancer. The puzzle piece in primary colors symbolizes Autism. Other diseases and causes have standard colors that unite their advocates, but ALS is kind of all over the place. The ALS Association uses red, while the ALS Division of the Muscular Dystrophy Association has a blue and white striped ribbon. Internationally, the Motor Neuron Disease (MND) has a combination of blue and orange in their messaging.

 

Amyotrophic lateral sclerosis (ALS) is a universally fatal neuromuscular disease that attacks the brain and spinal cord. The average life span after diagnosis is 2-5 years. ALS takes away the ability to move, speak, swallow, and ultimately breathe. ALS is a disease that struggles for identity in so many ways. It is considered an orphan disease. The generally accepted definition of orphan disease is: “a condition that affects fewer than 200,000 people nationwide.” In the United States it is estimated that 30,000 people are living with ALS at any given time.

 

I learned about ALS nine years ago while watching an NBC broadcast of the Ironman World Championship. Like most others, I’d heard of Lou Gehrig’s disease. I read Tuesdays With Morrie and had heard Lou Gehrig’s words, “I might have been given a bad break, but I've got an awful lot to live for,” but all I really knew was that Lou Gehrig’s disease was bad. Not only did I not know what the letters A L S stood for, but I had no idea that ALS was Lou Gehrig’s disease…and let’s face it, I didn’t truly know what that disease was. At the urging of our son, our family became involved in fundraising and advocacy for ALS. We educated ourselves on the disease – the onset, the symptoms, the progression – and then we met and visited people who had ALS, doctors who treated them, researchers who studied the disease. And then we dove in – full force, resolute to stay committed until a cure is found. We founded the nonprofit organization, Cure for ALS with this mission.

 

In nine years there have been great strides in research, treatments, and technology to help those living with ALS – but we all still await a cure. In the meantime, the small but mighty group of ALS Advocates across the country - the world - work tirelessly to give a voice to the voiceless and to get others to listen and learn. The recent Ice Bucket Challenge was mind-blowing for the ALS community. I hope Pete Frates and his friends have only opened the door and that the ice bucket challenge sensation was not a one-time campaign but the start of something much larger.

 

So getting back to my original question – What color is ALS? – how can we in the ALS community help to grow what Pete Frates and the Ice Bucket Challenge started? Perhaps one way is to unite in an identifying color…and what better color than something neon that stands out, hurts your eyes, and sticks in your memory? May is ALS Awareness Month in the U. S. and I propose we paint the country neon green. For one month next spring, May 2015, let’s change our logos to neon green, ask sports teams to wear jerseys, socks, or accessorize uniforms with neon green in support of ALS Awareness Month. Let us unite in a loud color to keep the momentum going and honor those we have lost, people living with ALS (pALS), and those who will be diagnosed.

 

For this article I’ve changed the Cure for ALS logo to neon green. In May we will kick off ALS Awareness month with our annual FIESTA 5k/15k Challenge and the event will be sporting a neon green color. Will you join us in painting the world neon for ALS? pALS are counting on you.

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ALS patients preserve their voice with 'voice banking' | Model Talker

ALS patients preserve their voice with 'voice banking' | Model Talker | ALS | Scoop.it
As Vashti Ross prepares to lose her ability to speak, she is recording her voice now with the help of a computer program called Model Talker.

Via TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS
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Dying Man's Video Advice For Daughter

Dying Man's Video Advice For Daughter | ALS | Scoop.it
Motor Neurone Disease sufferer Ian Pratt is recording advice for his three-year-old so he can be there for her when she is older.

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From Baseball Star to Battling ALS

From Baseball Star to Battling ALS | ALS | Scoop.it
I once prided myself on my strong hands. They helped me become a baseball star and eventually captain the Boston College Eagles in 2007. They helped me grip the bat, fire the barrel through the zone and squeeze a fly ball safely into my outfield mitt...

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Gifts of Hope - Priceless | *Donate to Massachusetts General Hospital for ALS research |

Gifts of Hope - Priceless | *Donate to Massachusetts General Hospital for ALS research | | ALS | Scoop.it
Today as I watched my husband, stilled of any movement for several years from ALS, type an email to our lawyer to settle life for the rest of us, I realized that his blinks were coming so much slower, sometimes spaced by several seconds.  His only means of communication using words comes at a cos...

Via TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS
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Who should have say on a patient taking experimental drugs?

Who should have say on a patient taking experimental drugs? | ALS | Scoop.it
Darcy Olsen, president of the Arizona-based Goldwater Institute, and Richard Garr, president of Neuralstem, a biotech company, wrote Right to Try experimental drugs in USA Today. They pointed out that this year, more than 5,000 Americans will lose their battle with ALS, commonly known as Lou Gehrig's disease. Up until recently, there was no medicine on the market that significantly improved the lives of ALS patients. But now there is one in clinical trials that holds considerable promise, but it has not been granted Food and Drug Administration approval. The average amount of time it takes to get a drug through the FDA approval process is 10 years. That's time that terminal patients don't have.

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MPCIRHC.ORG's curator insight, July 16, 11:24 AM

Unfortunately, when an unfortunate event happens in the USA, the less informed cease upon that event to involve government more into the lives of others. This seems to be more of a CYA knee jerk reaction rather than a sincere protection of the masses result. A drug that is invented and tested in the USA and may have life saving results should be available in the USA.However, the FDA's CYA regulations that make companies pay up to a Billion dollars for more test over a period of over 10 years to do more and more testing..is an over reach by the government. Medical Tourism for life saving medication is NOT be the norm, which it is today in the USA. Support the Goldwater Institute's efforts to make available life saving medication to the same people that actually invented it and the masses.

MPCIRHC.ORG's curator insight, July 16, 11:26 AM

Unfortunately, when an unfortunate event happens in the USA, the less informed cease upon that event to involve government more into the lives of others. This seems to be more of a CYA knee jerk reaction rather than a sincere protection of the masses result. A drug that is invented and tested in the USA and may have life saving results should be available in the USA.However, the FDA's CYA regulations that make companies pay up to a Billion dollars for more test over a period of over 10 years to do more and more testing..is an over reach by the government. Medical Tourism for life saving medication is NOT be the norm, which it is today in the USA. Support the Goldwater Institute's efforts to make available life saving medication to the same people that actually invented it and the masses.

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CNN Presents "Fighting ALS" | 3 Part Series Begins: 6-26-2013

CNN Presents "Fighting ALS" | 3 Part Series Begins: 6-26-2013 | ALS | Scoop.it

 Beginning on Wednesday, June 26 at 1:30 pm  Suzanne Malveaux CNN will present a compelling three part series, Fighting ALS. The series will offer a remarkable look into the lives of 3  ALS patients. Packard Center director Dr. Jeff Rothstein will provide medical and research insight for the series. 

This is a MUST SEE......Set Your DVR's!

http://www.cnn.com/video/#/video/bestoftv/2013/06/22/exp-als-gleason-promo-1.cnn

 

 

 

 

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Patrick Ford Dwyer Guest Book on The Seattle Times

Patrick Ford Dwyer Guest Book on The Seattle Times | ALS | Scoop.it
Sign and view the Guest Book, leave condolences or send flowers.
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Stanford researchers identify genetic suspects in sporadic Lou Gehrig's disease

Stanford researchers identify genetic suspects in sporadic Lou Gehrig's disease | ALS | Scoop.it
Researchers at the Stanford University School of Medicine have identified mutations in several new genes that might be associated with the development of spontaneously occurring cases of the neurodegenerative disease known as amyotrophic lateral...

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Life with ALS- My mother's story

Life with ALS- My mother's story | ALS | Scoop.it
Raising awareness; Help defeat ALS

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Devote More Funding to Lou Gehrig's Disease Research ...

Devote More Funding to Lou Gehrig's Disease Research ... | ALS | Scoop.it
Lou Gehrig's disease is a fatal disease that claims more than 5000 lives a year, and currently has no known treatment. Urge the National Institutes of Health to increase funding for Lou Gehrig's research in order to find effective treatments and ...
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Crowded Courtroom for N.F.L. Lawsuit

Crowded Courtroom for N.F.L. Lawsuit | ALS | Scoop.it
Crowded Courtroom for N.F.L. Lawsuit by KEN BELSON and JON HURDLE Published: April 9, 2013 PHILADELPHIA — The two legal teams, the one for the N.F.L. and the one for the retired players suing the l...

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Franciscan clinic in Tacoma makes life easier and longer for people with ALS

Franciscan clinic in Tacoma makes life easier and longer for people with ALS | ALS | Scoop.it
Tim Hoyt spent decades teaching chemistry at the University of Puget Sound. People called him Wizard.

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Steve Gleason seeks $500 million to find ALS cure

Steve Gleason seeks $500 million to find ALS cure | ALS | Scoop.it
After a summit on the disease last year, Team Gleason is now starting 'Answer ALS,' setting up a council of patients, care givers, doctors, researchers, and pharmaceutical companies to find new therapies for treatment, like using stem cells.

Via TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS
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TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS's curator insight, June 26, 10:12 PM

By Jeff Duncan, NOLA.com | The Times-Picayune

http://www.nola.com/saints/index.ssf/2014/06/steve_gleason_launches_bold_ne.html

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Can 3D brain view help treat Alzheimer's, Parkinson's?

Can 3D brain view help treat Alzheimer's, Parkinson's? | ALS | Scoop.it
In a breakthrough that may help in developing drugs for Alzheimer's and other neurological disorders, researchers have developed a 3D view of an important receptor in the brain.
This receptor allows us to learn and remember, and its dysfunction can result in a wide range of neurological diseas

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U.S. Neurologist Care Saves 4,600 Lives of People with Parkinson's Each Year

U.S. Neurologist Care Saves 4,600 Lives of People with Parkinson's Each Year | ALS | Scoop.it

MIAMI, June 10, 2014 /PRNewswire-USNewswire/ --The National Parkinson Foundation (NPF) released an important study stressing the importance of neurologist care at the 18th International Congress of Parkinson's Disease and Movement Disorders in Stockholm this week. The key finding is that expert neurologist care not only saves about 4,600 lives, but better access to this.


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Dad's walk down the aisle more like a miracle | Augie Nieto

Dad's walk down the aisle more like a miracle  |  Augie Nieto | ALS | Scoop.it
RANCHO PALOS VERDES – The guests were crying before the wedding began, even before the bride set foot in the aisle atop a cliff, perched splendidly in the Saturday afternoon sunshine and high above the Pacific Ocean.

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Oregon State University researchers discover promising new therapy for Lou Gehrig's disease - Oregon - NewsLocker

Oregon State University researchers discover promising new therapy for Lou Gehrig's disease - Oregon - NewsLocker | ALS | Scoop.it
Researchers at Oregon State University have determined that a copper compound known of for decades may for the basis of a therapy for ALS, or Lou Gehrig’s disease.

Tests showed that oral intake of the compound significantly extended the lifespan and improved the locomotor function of transgenic mice that are genetically engineered to develop the debilitating, terminal disease.

The study was published in the Journal of Neuroscience and included researchers from Australia, Oregon and the Unit

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RESCHEDULED to air July 1-3 1:00 P.M. EST. CNN Presents "Fighting ALS" | 3 Part Series

RESCHEDULED to air July 1-3  1:00 P.M. EST. CNN Presents "Fighting ALS" | 3 Part Series | ALS | Scoop.it

RESCHEDULED to air July 1-3 1:00 P.M. EST.

 

 Beginning on Wednesday, June 26 at 1:30 pm  Suzanne Malveaux CNN will present a compelling three part series, Fighting ALS. The series will offer a remarkable look into the lives of 3  ALS patients. Packard Center director Dr. Jeff Rothstein will provide medical and research insight for the series. 

This is a MUST SEE......Set Your DVR's!

http://www.cnn.com/video/#/video/bestoftv/2013/06/22/exp-als-gleason-promo-1.cnn

 

 

 

 

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A Matter Of Time - An ALS | MND Documentary

Documentary feature about Kathryn Calder of The New Pornographers. Driven by adversity, inspired by family.

Via TEAM Mike Lopez Memorial Foundation |Find us on Twitter:@TEAMCUREALS, Rosa Silveira
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Paul Cellucci, former governor and US ambassador to Canada, dies at 65 from ALS

Paul Cellucci, former governor and US ambassador to Canada, dies at 65 from ALS | ALS | Scoop.it
Argeo Paul Cellucci, a Hudson native who rose from a smalltown selectman to become governor of Massachusetts and later US ambassador to Canada, died at home this afternoon after a five-year battle with Lou Gehrig’s disease.

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Pittsburgh Couple's Everlasting Love Perseveres With Fighting Spirit

Steve Dezember's voice may be soft, but his will is strong. Even though ALS is slowly claiming his body, it can't steal his spirit. He and his wife continue to inspire through their never-ending dedication of love to one another.

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Help Tommy Help His Mom - Patch.com

Help Tommy Help His Mom - Patch.com | ALS | Scoop.it
Help Tommy Help His Mom
Patch.com
Seven-year-old Tommy Swift of Warren recently decided that he would commit some of his time to helping his mother, Natalie, who has Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease.
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Physicist Stephen Hawking visits LA stem cell lab - USA TODAY

Physicist Stephen Hawking visits LA stem cell lab - USA TODAY | ALS | Scoop.it
Physicist Stephen Hawking visits LA stem cell lab USA TODAY LOS ANGELES (AP) — Stephen Hawking on Tuesday toured a stem cell laboratory where scientists are studying ways to slow the progression of Lou Gehrig's disease, a neurological disorder that...
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The 7th Annual Fiesta 5K | Packard Centers -ALS Research | May 4, 2013

The 7th Annual Fiesta 5K | Packard Centers -ALS Research | May 4, 2013 | ALS | Scoop.it
March eNews: Annual Packard Symposium holds true to the mission; ALS advocate starts research initiative in memory of loved ones; Fiesta 5K is only a month away; We want to hear from you!

 

Last year the event raised just over $330,000 and welcomed 2,500 participants.  We want this year’s event to be even bigger!


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