Ken Sutcliffe says he “was born” to help others – a mentality that led him to join the army and become a firefighter after his time with the military ended. Unbeknownst to Ken, some studies have shown firefighters and Veterans are each twice as likely to develop ALS – also known as Lou Gehrig’s disease – than others who haven’t served in these professions.[1],[2] Now, as someone living with ALS, Ken pursues his passion for helping others in a different way by spreading awareness of this devastating disease.

janssenLAIs.com

ALS is a rapidly progressive, neurodegenerative disease, with no cure. People living with ALS eventually lose their ability to walk, write, speak, move, swallow, and breathe on their own.[3] In honor of First Responders Day on October 28, we’re shining a light on those who heroically risk their lives helping others, like Ken, to inform them of this disease, their risk, and its impact.

On October 19, Ken Sutcliffe, a retired firefighter, U.S. Veteran, and MTPA patient ambassador will be available to share his personal story of living with ALS, discuss how he’s helping to spread awareness of the disease, and share how others living with the disease can help support the ALS community. Ken will be joined by his wife and primary caregiver, Andi Sutcliffe.

ALS Facts:
·       ALS is a neurodegenerative disease that can progress rapidly without treatment.2
·       An estimated 5,000-6,000 Americans are diagnosed with ALS each year.[4],[5] ·       Initial symptoms like muscle weakness, loss of balance, and slurred speech can be subtle at first, and because of this, it can take up to 12 to 14 months to be diagnosed with ALS.[6],[7] ·       The majority of people with ALS succumb to the disease two to five years after diagnosis, but disease progression can vary significantly across the patient population.[8]

Interview is courtesy: Mitsubishi Tanabe Pharma America, Inc.

#heroes #lougehrig #kensutcliffe #andisutcliffe #lougehrigdisease #firefighters #firstresponders #support

The post SPOTLIGHTING AMERICAN HEROES LIVING WITH ALS ON FIRST RESPONDERS DAY Retired Firefighter and U.S. Army Veteran Shares His Story of Living with Amyotrophic Lateral Sclerosis (ALS)  appeared first on Good News!.

Listen to “SHARING REAL STORIES OF PEOPLE LIVING WITH ALS THIS ALS AWARENESS MONTH in MAY” on Spreaker.


Former Nurse Practioner Diagnosed with Amyotrophic Lateral Sclerosis (ALS) in Her 30’s
Advocates to Raise Awareness

On the day Stephen Hawking succumbed to amyotrophic lateral sclerosis (ALS), 32 year-old Kate Nycz, a former nurse practioner, began her ALS journey. Hearing stories mostly about older men being diagnosed, she never imagined ALS could affect a young woman like herself.

ALS – also known as Lou Gehrig’s disease – is a rapidly progressive, neurodegenerative disease that currently has no cure. People living with ALS eventually lose their ability to speak, swallow, eat, move and breathe.

May is ALS Awareness Month, and in honor of that, we’d like to recognize the experiences of those impacted by this devastating disease and emphasize the importance of spreading awareness among the ALS community and beyond.

On Friday, May 5, Kate will be available to share her ALS story, discuss how she’s advocating and serving as a mentor for people with ALS, especially young women, and how others living with this disease can provide their support. Kate will be joined by her husband and primary caregiver, Kevin.

ALS Facts:
• On average, a new case of ALS is diagnosed every 90 minutes in the U.S.
• An estimated 5,000-6,000 Americans are diagnosed with ALS each year.
• Initial symptoms like muscle weakness, loss of balance and slurred speech can be subtle, and because of this, it can take up to 12 to 14 months to be diagnosed with ALS.
• The majority of people with ALS succumb to the disease two to five years after diagnosis, but disease progression can vary significantly across the patient population.

Interview is courtesy: Mitsubishi Tanabe Pharma America, Inc. (MTPA)
Footnotes available

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ALS, Lou Gehrig’s Disease, takes many lives, Everything ALS is doing

Health Disparities in the U.S. Exposed During COVID Calls for Less Talk, More Action A NEW REPORT IS CHARTING A BOLD ROADMAP TO ACHIEVE HEALTH EQUITY BY 2040

Philadelphia Tour with T, standing at SEPTA, what a Joy…

Here are two concerts that I performed in, one with my buddy Holmes Stoner.

Holmes Stoner playing and singing in my home…

Paul Sladkus live piano concert

Moutai from China, the leading liquor

To be frank we are stressed out from SO MUCH GOOD IN THE WORLD THAT WE WANT TO SHARE WITH YOU. Please consider donating to our efforts, all money will go to our nonprofit for our World Water Day March 22 and Peace Day Broadcasts on September 21, 2022. To donate go to: https://goodnewsplanet.com/peacedayparty/peace-day-donations/.

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Deb Fabricatore lost her younger brother to ALS in 2014, and became involved in ALS advocacy. Indu Navar lost her husband in 2019 and immediately stepped up into action by building a nonprofit devoted to honoring her husband. Both women and the members of the Everything ALS team have vowed to create a legacy of treatment and cure for their loved ones lost to ALS by building a non-profit determined to tackle the mission of Care to Cure for those diagnosed with ALS.

ALS also known as Lou Gehrig’s disease is a progressive, fatal neuro degenerative disease. It discriminates against no – one It can affect young, old, any race, age, background. It has no treatment and no cure. Those stricken with the disease lose their ability to move, talk, eat while their muscles whither away, causing paralysis and being trapped in their own bodies. Indu Navar and Deb Fabricatore are two of the co-founders of EverythingALS. There are many other dedicated team members including Austen Eadie-Friedman. Everything ALS is Navar’s brainchild a non-profit bringing technological innovations and data science to support efforts–from care to cure– for people with ALS, by offering an open data platform for direct engagement with patients, caregivers, researchers drug companies and using citizen driven research. Their non-profit has grown rapidly in their two short years of existence.

As patient advocates EverythingALS hosts bi-monthly community talks that are designed to provide patients and caregivers with the support and information that they will need throughout their ALS journey. They garner top tier speakers from research, medicine, technology and advocacy to present and answer questions as people watch and participate from their homes. This information and ability to communicate with such high-level experts from the comfort of their homes has been invaluable to the ALS community.

The Everything ALS team believe technology will be the key enabler for the innovation to end ALS. They support efforts to find a cure and or treatment for ALS by creating a platform for direct engagement with patients, researchers and cutting-edge Cloud and AI technologies.
The diverse team is composed of patient advocates, students, nurses, physicians, biologists, ALS patients. They are committed to helping provide information to those who are affected by ALS.

One example of an Everything ALS projects is the Speech Research Study, which is the development of speech analysis of audio and facial metrics for biomarkers for early detection and diagnosis, clinical endpoints and better voice recognition tools for ALS. As of now ALS has no test, or biomarker to assist in diagnosis. Everything ALS shares their data and works in collaboration with various research institutions such as, MIT, Mass General Harvard, UT Austin and Google to name a few. They are also supporting researchers by providing multi-omics analysis with machine learning and big data to uncover ALS causes, subtypes, pathways and drug targets.

EverythingALS continues to recruit participants for this Speech Study of control subjects (those with no ALS diagnosis) and those diagnosed with ALS. They believe citizen driven research will help solve the puzzle that will lead to treatment and cure of ALS. The study takes about 10 minutes per week on your computer, pad, or phone at any time that is convenient for the participant.
They ask people interested to go to www.EverythingALS.org/research or email Deb@EverythingALS, or call Deb directly at 908-420-4751.

#deb #fabricatore #als #indu #navar #treatment #cure #diagnose #lou #gehrigs #disease #neuro #degenerative #ability #everythingals #austen #eadie-friedman #amyotrophic #lateral #sclerosis #eadie #friedman #gehrig #gehrig’s

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Cass is a Managing Director at The Wall Street Solutions Group.

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Host:   Nick Loeb, Kelly Killoren Bensimon, Mark Birnbaum, Eli Bronfman, Unik Ernest, Darius Kirksey, Tal Alexander, Patrick Bolchoz, David Schulman, Howard Lorber, Daleela Farnia, Committee: Kris Haber, Ivy Mahsciao, Dori Cooperman, Jeff Hirsch, Stuart Orenstein, Chris    Barish, Mark Chaflin

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The Ice Bucket Challenge, sometimes called the ALS Ice Bucket Challenge, is an activity involving dumping a bucket of ice water on one’s head or donating to the ALS Association in the United States. It went viral throughout social media during the Northern Hemisphere summer of 2014.^[1][2]

The challenge dares nominated participants to be filmed having a bucket of ice water poured on their heads. A common stipulation is that nominated people have 24 hours to comply or forfeit by way of a charitable financial donation.^[3]

Origin

The origins of the idea of dumping cold water on one’s head to raise money for charity are unclear and have been attributed to multiple sources. During the Northern-Hemisphere winter of 2013–14, a challenge of unknown origin often called the “Cold Water Challenge” became popular on social media in areas of the Northern United States. The task usually involved the option of either donating money to cancer research or having to jump into cold water.^[4]

One version of the challenge started in New Zealand on July 4, 2014, with a fundraising page on behalf of the Cancer Society to help support patients and their families through the trauma of a cancer diagnosis. As with similar challenges, it was usually filmed so footage can be shared online.^[5]

Atlanta Falcons players, coaches, and staff take the Ice Bucket Challenge.

The challenge was popularized in the United States on June 30, 2014, when the Golf Channel Morning Show televised the social media phenomenon and performed a live on-air ice bucket challenge.^[6] Soon after, on July 15, 2014, golfer Chris Kennedy did the ice-bucket challenge and challenged his cousin Jeanette Senerchia of Pelham, NY, whose husband, Anthony, has had ALS for 11 years. A day later she did the challenge while her 6-year-old daughter filmed her in front of their house. Senerchia’s network on Facebook connected with Pat Quinn, a 31-year-old in Yonkers, NY, who was diagnosed with ALS in March 2013. Quinn called upon his friends and family. Soon, his whole network was posting challenges, including family in Florida, friends in Ireland and Greece, and a bar full of locals, which was broadcast on local television.^{[citation needed]}

Local Green Bay radio and TV personality John Maino performs the ALS Ice Bucket Challenge.

Quinn’s Facebook network overlapped with Massachusetts resident and formerBoston College baseball player Pete Frates, who has ALS and began posting about the challenge on Twitter.^[7]

The ice bucket challenge has also become popular in the United Kingdom through social media, with participants doing it for the Motor Neurone Disease Association and Macmillan Cancer Support.

The President of the United States, Barack Obama, was challenged by Ethel Kennedy but declined, opting to contribute to the campaign with a donation of $100.^[8] Justin Bieber,^[9] LeBron James,^[10] and “Weird” Al Yankovic^[11] also challenged President Obama after completing the Ice Bucket Challenge.

Rules

Within 24 hours of being challenged, participants are to video record themselves in continuous footage. First, they are to announce their acceptance of the challenge followed by pouring ice into a bucket of water. The bucket is then to be lifted overhead and poured over the participant’s head. Then the participant can call out a challenge to other people.

In one version of the challenge, the participant is expected to donate $10 if they have poured the ice water over their head and donate $100 if they have not.^[12] In another version, dumping the ice water over the participant’s head is done in lieu of any donation, which has led to some criticisms of the challenge being a form ofslacktivism.^[13]

Legacy

In the Northern-Hemisphere summer of 2014, the Ice Bucket Challenge went viral on social media and became a pop culture phenomenon, particularly in the United States, with numerous celebrities, politicians, athletes, and everyday Americans posting videos of themselves online and on TV participating in the event.^[3][8]

Before the popularity of the Ice Bucket Challenge, levels of awareness, fundraising, research dollars, and overall public support for amyotrophic lateral sclerosis(ALS) were extremely low.^[14] After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations for ALS soared to unprecedented levels. On August 18, 2014, the ALS Association announced that it had received $15.6 million in donations compared to $1.8 million during the same time period (July 29 to August 18) in the prior year. These donations came from both existing donors and 307,598 new donors to the Association.^[15]

Steve-O questioned the campaign, suggesting that celebrities’ videos generally forgot to share donation information for ALS charities, and that the $15 million dollars in funds is insignificant, given the star power of the celebrities participating. He noted that, of the videos he viewed, only Charlie Sheen and Bill Gates noted that point is to donate money.^[16]

United Kingdom

In the United Kingdom, people have also been doing the challenge for the Motor Neurone Disease Association. The Motor Neurone Disease (MND) Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.^[17] MND Scotland provides care and support to everyone affected by Motor Neurone Disease in Scotland.^[18]

This challenge has inspired other charities in the UK to get involved, including Macmillan Cancer Support, who are calling it the Macmillan Ice Bucket Challenge.^[19]

Governor of South Carolina Nikki Haley does the ALS Ice Bucket Challenge.

Notable participants

This article contains embedded lists that may be poorly defined, unverified orindiscriminate. Please help to clean it up to meet Wikipedia’s quality standards. Where appropriate, incorporate items into the main body of the article. (August 2014)

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