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Assistive technology can provide a major benefit to people living with ALS and their caregivers. That is why some of the advances we have seen in recent years, thanks to generous donations from the ALS Ice Bucket Challenge and beyond, are so exciting.
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Certified Treatment Center of Excellence Spotlight: Froedtert & Medical College of Wisconsin
Studies have shown the value of attending a multidisciplinary clinic for a person with ALS, including longer survival, increased quality of life, and improved access to potential therapies. Since 1998, The ALS Association’s national Certified Treatment Centers of Excellence (CTCEs) network has provided ALS care and services in a supportive atmosphere, with an emphasis on hope and quality of life.
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Throwback Thursday: 2017 Mission Accomplishments
The ALS Association fights for people with ALS every day, leading cutting-edge research to discover treatments and a cure for ALS, and serving, advocating for, and empowering people with the disease to live their lives to the fullest. In honor of Throwback Thursday, let’s look back at the advances in our mission areas of Advocacy, Care Services, and Research during 2017.
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How Telemedicine is Integrating into ALS Multidisciplinary Care
Did you know we have been using telemedicine since the 1960s? Neil Armstrong and his fellow astronauts wore medical monitoring devices developed by NASA during their first moon landing in 1969. Since then, the use of telemedicine has exploded. Over half of all U.S. hospitals now use some form of telemedicine through more than 200 telemedicine networks.
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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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Home Infusion and Coverage Information for People Living with ALS
Home infusion is a safe and effective option available to hospital patients involving the administration of intravenous medications in a patient’s home or other alternate treatment setting. Infusions performed at home have been found to be safe, clinically effective, and improve patient quality of life while being less costly as compared to infusion care provided in a hospital setting. This also leads to fewer disruptions in patients’ personal schedules and responsibilities.
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Announcing the Updated Living with ALS Resource Guide Series
Over the last year and a half, The ALS Association has been working with authors from Association Chapters, ALS centers and clinics and other ALS organizations to rewrite the original Living with ALS manual series, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers and other healthcare professionals, as well as our chapter and national staff.
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Two Young Entrepreneurs Win Part of the ALS Assistive Technology Challenge
After over a year in the making, The ALS Association in partnership with Prize4Life awarded the ALS Assistive Technology prize in Dublin during the ALS/MND International Alliance Meeting. We are thrilled to award one of the top prizes to Dexter Ang and David Cipoletta, two young entrepreneurs that founded Pison Technology based out of Massachusetts. They blew the judges away with their easy-to-use, self-contained communication system based on muscle EMG signals.
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The ALS Association Care Services Survey Results
In July 2016, The ALS Association invited members of the ALS community (defined as people living with ALS, family members, and caregivers) to participate in a community care services survey. This survey included 15 questions and was shared via several of The Association’s communication channels. Nearly 800 members of the community responded.
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Bringing Brain Computer Interfaces Home
Dr. Andrew Geronimo is a talented young investigator using brain computer interface (BCI) technology to improve the lives of people living with ALS by enhancing their ability to communicate. He and his mentor Dr. Zachary Simmons, also at Penn State Hershey Medical Center, have received a grant from The ALS Association to develop new opportunities for BCI technology.
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From One Caregiver to Another
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association's Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.
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