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

The post SHARING REAL STORIES OF PEOPLE LIVING WITH ALS THIS ALS AWARENESS MONTH in MAY appeared first on Good News!.

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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The post ALS, Lou Gehrig’s Disease, takes many lives, Everything ALS is doing appeared first on Good News!.