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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ALS Hackathon Results in New and Exciting Technology Ideas

ALS is a severely debilitating disease that takes away a person’s ability to move, speak, swallow, and eventually breath. There is much to be accomplished to immediately enhance their quality of life. With this in mind, we sponsored an ALS Hackathon in partnership with Prize4Life to bring together bright, young students to brainstorm and quickly develop an assistive technology prototype. This past October, over 70 students attended the Hackathon, from Massachusetts Institute of Technology (MIT), Harvard, and Northeastern University. They worked closely with people living with ALS, technology experts, and clinicians to come up with unique ideas. They moved fast, over only a 24-hour time period, and at the end came up with some exciting ideas to help people with ALS in a variety of ways.

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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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I’m Thankful for People Like You!

By Stephen Winthrop

If you ever run into me, you’ll notice that I am wearing a button that says, “I have ALS. Ask me about it.” I love this button because of the conversations it creates with people who want to learn more about ALS and my own journey. Now, I’d like to have an important conversation with you.

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2017’s BIGGEST Successes by our ALS Advocate Community

We bring the ALS community together to speak with one voice to increase awareness, advocate for research funding, and educate legislators – impacting thousands of people with ALS and their families. This advances out mission to discover treatments and a cure, to serve, advocate for, and empower people living with ALS to live their lives to the fullest.

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