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.

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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!.

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

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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.

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