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New ALS Resource Guide Delves into All Aspects of Multidisciplinary Care
A new educational resource from The ALS Association, Including the Multidisciplinary Team Approach in Your Care, is now available. The guide provides an overview of the multidisciplinary team approach to care, describes a typical clinic visit, and discusses additional options for care and support from providers outside of the core care team.
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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.
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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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Care Services Educational Offerings Update – March 2017
In late-February 2017, The ALS Association announced the release of 11 new Living with ALS resource guides on our website, www.alsa.org. The guides were designed to inform and educate people about ALS in a comprehensive and easily understood format, addressing many of the common concerns and issues that face people living with ALS.
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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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ALS Entrepreneur Kevin Gosnell Passes Away Leaving Important Legacy in ALS ONE
Kevin Gosnell, founder of ALS ONE, passed away on Monday because of complications from the disease. Gosnell was diagnosed with ALS in spring 2015 and immediately put his business acumen and CEO leadership skills to work, convening the best minds in the ALS community. He founded ALS ONE in January 2016 and brought together leading neurology experts and care specialists from Massachusetts in partnership to leverage their institutions’ strengths to expedite progress toward finding a treatment for ALS within the next four years.
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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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