A Day in the Life at the ALS Clinic – The Berkley Family

Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.

Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.

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Training Program Gives Young Caregivers Confidence, Peer Support

Youth who help care for their loved ones with ALS are learning about important areas of ALS care – from physical therapy, occupational therapy, and speech therapy, to social work and neurology — through YCare, an education and support program developed and directed by Dr. Melinda S. Kavanaugh, Assistant Professor of Social Work with the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee.

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Update from Assistive Technology Challenge Winners – Donders Institute and Pison Technology

People living with ALS eventually lose the ability to speak to their loved ones and friends. In partnership with Prize4Life, we initiated the ALS Assistive Technology Challenge to improve the lives of people with ALS. The Challenge culminated last December in Dublin during the ALS/MND International Alliance Meeting, when we brought together five top assistive technology teams to find the best prototype designed to help people living with ALS communicate with ease. The key prize criteria were that the technology is adaptable to the changing phases of the disease and the teams had a solid business plan to bring the technology to market in a reasonable time frame. Importantly, people with ALS were engaged in the development and review of the Challenge.

At the end of the day, there were two winners – Dr. Peter Desain and team of The Donders Institute for Brain, Cognition, and Behavior in the Netherlands and Dexter Ang and team of Pison Technology at Massachusetts Institute of Technology. We recently sat down with the two winners to learn about the progress they made in the past year.

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2017’s BIGGEST Accomplishments by our Nationwide ALS Care Community

People with ALS come first in everything we do. The ALS Association is dedicated to providing those fighting ALS, their families, and friends with the critical information, support, and resources necessary to live a full life and better meet daily challenges.

Our chapters assist people living with ALS and their families in our community through our equipment loan closets, support groups, augmentative communication and assistive technology program, caregiver support, and education and outreach. We also collaborate with the best ALS physicians and clinics in our service area to help ensure that people living with ALS have access to specialized care, based on best practices.

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ALS Association-Funded Researcher Don Cleveland Wins 2018 Breakthrough Prize in Life Sciences

Dr. Don Cleveland of University of California, San Diego received the 2018 Breakthrough Prize in Life Sciences, an eminent honor to our long-time-funded ALS researcher. He received a $3 million prize, the largest individual monetary prize in science, during “The Oscars of Science” gala in Silicon Valley hosted by Morgan Freeman and aired on the National Geographic channel. He will use the Prize to continue his vital ALS research projects. The Prize was founded in 2013 and honors “transformative advances towards understanding living systems and extending human life,” according to officials. Notable individuals sponsor the Prize, including Priscilla and Mark Zuckerberg, Sergey Bin, Pony Ma, Yuri and Julia Milner, and Anne Wojcicki.

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‘Super Positive’ ALS Advocate Inspires Those Around Him

Doug Clough is a fearless ALS advocate from Gilbert, Ariz., who has made it his mission to make a huge impact on people living with ALS. Despite his ALS diagnosis in April 2014, he keeps going. He is involved in ALS advocacy in every way possible, from participating in The ALS Association National Advocacy Day to serving on the National ALS Registry task force to becoming a Northeast ALS Consortium (NEALS) Research Ambassador to participating in an ALS clinical trial, and this year being awarded the Iron Horse Award. Today, we are pleased to be joined by Doug who shares his story how he uses his endless energy to live life to its maximum potential.

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Air Force Veteran Fighting ALS One “Shy-Dye” Shirt at a Time

Diagnosed with ALS in February 2011 with bulbar ALS, Mickey Johnston is a U.S. Air Force Veteran. He lives in Atlanta, Ga. with his wife and caregiver, Debbie. They have been married for 37 years. We are thrilled to share Mickey’s story of how he started the “Shy-Dye Love Ministry” that brightens the lives of people living with ALS all over the world.

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