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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Co-Chaired by
Mark D. Friedman, Brown Harris Stevens; Jessica Mackin, James Lane Post; Randi Schatz

The Samuel Waxman Cancer Research Foundation (SWCRF) is proud to announce the return The Hamptons Happening! The 17th annual event has taken place on Saturday, July 10th, 2021. This year’s Hamptons Happening is a celebration of Health & Wellness, and the culmination of The Global Walk to Flatten the Cancer Curve with SWCRF partner, Walk with a Doc. Event committee member Maria Fishel and Kenneth Fishel will host the ticketed fundraiser on their estate in Bridgehampton.

This year’s honorees include HUGO BOSS, Fashion Inc; Dr. Kenneth Mark, Skin Cancer & Cosmetic Dermatology Expert; Natalie Cohen Gould, Co-founder of Come Back Cycle, Dir. Of Wholesale, FP Movement; and Chef and Restaurateur David Burke, David Burke Hospitality Management. The event will be co-chaired by Mark D. Friedman of Brown Harris Stevens, Jessica Mackin of James Lane Post, and Randi Schatz. SWCRF founder Samuel Waxman MD, along with event committee members Christine Arlotta, Antonella Bertello, Erica Fineberg, Maria Fishel, Jacqueline Frank, Norah Lawlor, Jamie Koff, Christine Prydatko, Suzanne Sabet, and Michael Snell will also be in attendance.

The Hamptons Happening is a cocktail chef-tasting event featuring a dozen chefs and spirits from The Hamptons and NYC providing tastings of their favorite dishes, cocktails and mocktails. The event will feature appearances by VIPS like Chris Wragge, anchor of CBS 2 Morning News, Danny Burstein from Broadway, Harry Lennix from The Blacklist, Harry Carson of The NY Giants, a performance by Freestyle Love Supreme, a Tony Award Winning Broadway Musical Improv Group, and many more!

The Global Walk to Flatten the Cancer Curve officially started on June 30th, 2021 and culminates at the SWCRF’s 17th Annual Hamptons Happening. The virtual walk will raise international awareness and funds for life-saving cancer research. Participants will log their steps during the 11 days with the aim of accumulating 25,000 miles, enough to travel around the world.

The incidence of cancer is rising around the world and advanced age is the most significant risk factor. More than 60 percent of Americans diagnosed with cancer are 65 and older. SWCRF, in collaboration with the National Cancer Institute and National Institute on Aging, is leading the way in funding the scientists who are working towards the next breakthrough in cancer treatments. Currently, SWCRF is funding 50 renown investigators on three continents, each working together to develop less toxic cancer treatments.

For more information, visit: www.waxmancancer.org/events/hamptons/

About Samuel Waxman Cancer Research Foundation (SWCRF):
The Samuel Waxman Cancer Research Foundation is an international organization dedicated to curing and preventing cancer. The Foundation is a pioneer in cancer research and its mission is to eradicate cancer by funding cutting-edge research that identifies and corrects abnormal gene function that causes cancer and develops minimally toxic treatments for patients. Through the Foundation’s collaborative group of world-class scientists, the Institute Without Walls, investigators share information and tools to speed the pace of cancer research. Since its inception in 1976, the Samuel Waxman Cancer Research Foundation has awarded more than $100 million to support the work of more than 200 researchers across the globe. For more information about the SWCRF research, visit www.waxmancancer.org.

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#samuel #waxman #cancer #research #foundation #pioneer #hugo #boss #david #burke #kenneth #mark #skin #friedman #jessica #mackin #james #natalie #cohen #hamptons

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