DiversityNursing Blog

This ALS Discovery Just Happened Thanks To The Ice Bucket Challenge

Posted by Erica Bettencourt

Fri, Jul 29, 2016 @ 12:17 PM

alschallenge.jpgIt seems like just yesterday everyone was pouring ice water on their heads to promote awareness for ALS. This silly challenge went viral and even celebrities joined in to raise money for the research foundation. Good news, it is paying off! 

ALS, or amyotrophic lateral sclerosis, is a progressive disease that attacks the nerve cells in the brain and spinal cord.

The average life expectancy after diagnosis is two to five years, and currently there is no cure.

Two years after the ALS ice bucket challenge rocked the internet, however, things might be about to change. 

A project called MinE at the University of Massachusetts Medical School has just discovered the gene that's responsible for ALS.

Until recently, one of the biggest obstacles to finding a cure for ALS had been not knowing what caused the disease. Now that researchers can pinpoint the gene (which is called NEK1), it will be that much easier to figure out how to reverse and/or treat its effects.

This incredible scientific breakthrough would not have been possible had MinE not received a $1,000,000 grant from the ALS Association/Ice Bucket Challenge. 

As such, it's only right that we pay tribute to the many people who sacrificed their dryness and dignity for the greater good.

Over 6,000 people are diagnosed with ALS each year in the United States alone. But this discovery puts us a big step closer finding a cure.

It's mostly thanks to a meme — a truth-or-dare type challenge that many at the time called pointless. This breakthrough, two years after the fact, just goes to show that virality does have power, power that, when harnessed in positive ways, can absolutely be used for the greater good.

Sure these GIFs and videos and images make us laugh, and sure, maybe some people didn't understand why they were participating or they were only doing it because their friends were, but the fact remains: The Ice Bucket Challenge inspired people to get up and actually do something that truly made a difference. And that's pretty incredible.
 
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Topics: ALS, ice bucket challenge

TV Anchor Shares Personal News In Heartbreaking Broadcast: 'I have ALS'

Posted by Erica Bettencourt

Mon, Feb 02, 2015 @ 11:55 AM

By Chris Serico

larry stogner resized 600

Larry Stogner, a retiring news anchor for an ABC affiliate in North Carolina, stunned viewers on Friday when he revealed he has ALS.

"For nearly four decades, I have met you right here, usually at 6," the WTVD anchor said during a Jan. 23 broadcast, as a slideshow of his life and career appeared on a screen behind him. "Boy, we've seen a lot of change over those years, but we have to stop meeting this way. I am sure that in recent months, you've noticed a change in my voice; my speech, slower. Many of you were kind enough to email me ideas about what it might be, or just to show concern, and I truly appreciate that. As it turns out, I have ALS, Lou Gehrig's disease."

Stogner added that, last summer, he'd participated in an Ice Bucket Challenge video to help raise awareness and money for the cause. "Little did I know, it was about to change my life," he said. "There is no cure. My career in broadcast journalism is coming to an end."

Married with six children, Stogner joined WTVD in 1976. In addition to conducting one-on-one interviews with Barack Obama, John McCain and other prominent political figures, the Air Force veteran reported live from Raleigh-Durham and beyond — including a 2002 assignment in Afghanistan, according to his ABC11 bio.

In the final minute of the broadcast, Stogner called his WTVD position "the best job in the world," and shared plans to take two weeks of vacation with his wife before returning in early February to share "a few final thoughts and a more personal goodbye."

Flanked by four of his WTVD colleagues, he concluded, "And now more than ever, I say to you, for all those 39 years: Thanks for the company. Have a good night."

Source: www.today.com

Topics: news, Awareness, health, healthcare, disease, medicine, treatment, cure, ALS, ice bucket challenge, TV, cause

The origin of Lou Gehrig's disease may have just been discovered

Posted by Erica Bettencourt

Wed, Nov 26, 2014 @ 11:56 AM

By Marie Ellis

motor neurons resized 600

Amyotrophic lateral sclerosis - also known as Lou Gehrig's disease - is a condition that gradually attacks nerve cells that control our voluntary movement, leading to paralysis and death. In the US, a reported 30,000 individuals are living with the disease, but now, scientists have identified a fault in protein formation, which could be the origin of this condition.

The researchers, from the University of Wisconsin-Madison, have published their study on amyotrophic lateral sclerosis (ALS) in the journal Cell Stem Cell.

According to the Centers for Disease Control and Prevention (CDC), nobody knows for sure why ALS occurs, and there is currently no cure.

The researchers of this latest study, led by Su-Chun Zhang, senior author and neuroscientist at UW-Madison, say previously, a genetic mutation was discovered in a small group of patients with ALS, prompting scientists to transfer that gene to animals for drug treatment testing. 

However, this approach has not yet worked. As such, Zhang and his team decided to study diseased human cells - called motor neurons - in lab dishes. These motor neurons are what direct muscles to contract, and Zhang explains this is where failures occur in ALS.

Discovery centers on faulty proteins inside motor neurons

Zhang was the first scientist to ever grow motor neurons from human embryonic stem cells around 10 years ago, and he has recently been transforming skin cells into induced pluripotent stem (iPS) cells, which are then transformed into motor neurons.

He explains that the iPS cells can be used as models for disease since they have many of the same characteristics as their donor cells.

"With iPS, you can take a cell from any patient, and grow up motor neurons that have ALS," Zhang explains. "That offers a new way to look at the basic disease pathology."

For their latest study, the researchers have focused on proteins that erect a transport structure - called a neurofilament - inside the motor neurons.

They say the neurofilament moves chemicals and cellular parts - including neurotransmitters - to far sides of the nerve cell. 

Zhang explains that the motor neurons, for example, that control foot muscles are around 3 ft long, so they need to be moved a whole yard from the cell body to the spot where they can signal the muscles.

As such, one of the first signs of ALS in a patient who lacks this connection is paralysis of the feet and legs.

'Findings have implications for other neurodegenerative disorders'

Before now, scientists have understood that with ALS, so-called tangles - misshapen protein - along the nerve's paths block the route along the nerve fibers, which eventually results in the nerve fiber malfunctioning and dying.

The team's recent discovery, however, has to do with the source of these tangles, which lies in a shortage of one of three proteins in the neurofilament.

Zhang explains that the neurofilament plays both a structural and a functional role:

"Like the studs, joists and rafters of a house, the neurofilament is the backbone of the cell, but it's constantly changing. These proteins need to be shipped from the cell body, where they are produced, to the most distant part, and then be shipped back for recycling.

If the proteins cannot form correctly and be transported easily, they form tangles that cause a cascade of problems."

 

He says their discovery is that the origin of ALS is "misregulation of one step in the production of the neurofilament."

Additionally, he notes that similar tangles crop up with Alzheimer's and Parkinson's diseases: "We got really excited at the idea that when you study ALS, you may be looking at the root of many neurodegenerative disorders."

Zhang and his team also observed that this misregulation happens very early, which is why it is highly likely that what they found is the origin ALS.

"Nobody knew this before, but we think if you can target this early step in pathology, you can potentially rescue the nerve cell," he says.

And as if this discovery is not exciting enough, the team also found a way to rescue the neural cells in the lab dishes, and when they "edited" the gene that orchestrates formation of the blundered protein, they found that the cells suddenly looked normal.

They report that they are currently testing a wide range of potential drugs, which brings hope to the domain of ALS research.

The CDC have a National ALS Registry, where patients with the condition can complete brief risk-factor surveys to help scientists defeat ALS.

Source: www.medicalnewstoday.com

Topics: studies, Lou Gehrig's disease, health, healthcare, research, health care, CDC, medical, medicine, ALS

Have You Heard about the "Ice Bucket Challenge?"

Posted by Erica Bettencourt

Wed, Aug 13, 2014 @ 11:53 AM

ALSA

628x471 resized 600

It may be warm in parts of the country, but some people aren’t drenching themselves in ice or cold water to cool down from elevated temperatures. A new phenomenon has hit the social media circuit – the “Ice Bucket Challenge.”

The challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice.

Beverly, Mass., resident Pete Frates, started the “Ice Bucket Challenge” with his family on the social sites Facebook and Twitter.  Frates, 29, has lived with ALS since 2012, and he has worked with The ALS Association’s Massachusetts Chapter.  A former Division 1 college athlete with Boston College Baseball, Frates tirelessly spreads awareness of Lou Gehrig’s Disease.

This viral sensation, which has used the hash tag #IceBucketChallenge, has attracted thousands of followers, including Boston Bruins stars Brad Marchand and Torey Krug, who willingly dropped frozen ice on themselves and issued the challenge to others.

“This is a creative way to spread ALS awareness via social media and in communities nationwide,” said Barbara Newhouse, President and CEO of The ALS Association.  “We thank Pete Frates and his family for getting so many people involved in spreading the word about ALS.”

Other examples of the challenge can be viewed on the Team FrateTrain Facebook page.

Source: www.alsa.org

Topics: Awareness, ALS, ice bucket challenge, viral videos, donations

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