Amyotrophic Lateral Sclerosis (ALS)
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ALS Integrated Care Pathway for the Champlain* District (Amyotrophic Lateral Sclerosis)
ALS Integrated Care Pathway For the Champlain* District (Amyotrophic Lateral Sclerosis) March 2008, 2nd Edition This document or excerpts thereof may not to be reproduced without the expressed written consent of the Champlain CCAC. * Please refer to [email protected] to learn about the Champlain district in Ontario, Canada. disponible en français Acknowledgements This document is the result of extensive consultation and collaboration with individuals from the community having ALS knowledge and experience. These individuals include: ALS Society Marion Williams, Regional Director, ALS Society of Ontario, Champlain District Nigel Van Loan, Caregiver and member of Board of Directors, ALS Society of Canada Champlain Community Care Access Centre Mary-Lou Anderson, Case Manager Sheila Bauer, Senior Director of Client Services Louise Brunet, Case Manager Brigitte Emes, Manager of Client Services Hospice at May Court Susan Smith, Program Coordinator The Ottawa Hospital Rehabilitation Centre Margo Butler, Speech-Language Pathologist Elaine Cawadias, Registered Dietitian Susan Geis, Physiotherapist Carole LeBlanc, Registered Respiratory Therapist Renée Longpre, Registered Respiratory Therapist Beverlee McIntosh, Social Worker Joan Norgren, Registered Respiratory Therapist Nancy Ridgeway, Registered Nurse Carole Roy, Occupational Therapist Vivian Stang, Chaplain Kathy Walker, Registered Respiratory Therapist VHA Health and Home Support Kim Parks, Program Director, Attendant Care Outreach Program Gwen Barton, Project Coordinator TABLE OF CONTENTS Page I. Introduction.................................................................................................1 i. What is an Integrated Care Pathway? ii. Why have an Integrated Care Pathway for ALS? iii. Who is the Target Audience for the Integrated Care Pathway? iv. A Message to the Primary Caregiver v. How should the Integrated Care Pathway be used? II. Key Considerations in ALS Disease Management...................................3 i. -
Marketing Coordinator - Generalist (Six-Month Contract) August 2018
Marketing Coordinator - Generalist (Six-month Contract) August 2018 About ALS Canada Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Founded in 1977, ALS Canada and our provincial partners are dedicated to supporting Canadians living with ALS and investing in research to make ALS a treatable, not terminal, disease. We are a registered charity that receives no government funding – all of our services and research are funded through the generosity of our donors and partnerships with provincial ALS Societies. Through the ALS Canada Research Program, we fund peer-reviewed research grants, foster collaboration and build capacity within Canada’s ALS research community, and participate in new areas of research where we are well- positioned to have an impact. Within Ontario, ALS Canada has a role similar to that of the provincial ALS societies providing services and support to help meet the needs of people living with ALS. ALS Canada advocates federally, provincially and locally for better government support and access within the healthcare system for people affected by ALS. Our world is challenging. The people we serve are dealing with a devastating illness. But in the midst of it, their resiliency and spirit is remarkable and moving. -
A Manual for People Living with ALS
2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 1 A Manual For People Living with ALS Seventh Edition ALS SOCIETY OF CANADA Jane McCarthy, MSc, MPH Editor 1(800)267-4257 www.als.ca AMYOTROPHIC LATERAL SCLEROSIS [email protected] SOCIETY Of CAnAdA SOCIÉTÉ CAnAdIEnnE dE LA SCLÉROSE LATÉRALE AMYOTROPHIQUE © Copyright 2012 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 3 Contributors Pg. vi Manual Preface Pg. ix Acknowledgement Pg. x How to Use the Manual Pg. 1 A Message of Hope Pg. 2 SECTION 1: WHAT IS ALS? Pg. 3 SECTION 2: COPING WITH ALS Pg. 11 SECTION 3: GETTING TO KNOW THE ALS SOCIETY Pg. 17 SECTION 4: ALS DISEASE MANAGEMENT Pg. 19 Adapting to Changes in Mobility and Maintaining Independence Pg. 30 Adapting to Swallowing Problems and Maintaining Good Nutrition Pg. 37 Adapting to Changes in Speech and Maintaining Communication Pg. 45 Adapting to Changes in Breathing and Maintaining Lung Function Pg. 51 Maintaining Good Oral Health Pg. 60 Approaching End-of-Life Issues and Advance Care Planning Pg. 63 SECTION 5: ASSISTIVE EQUIPMENT Pg. 68 SECTION 6: FINANCIAL & LEGAL ISSUES Pg. 74 RESOURCE SECTION Pg. 84 iii 2012 Manual People Living With ALS --- English_as.e$S_Layout 1 12-06-27 1:51 PM Page 4 4: ALS DISEASE Section 1: WHAT IS ALS? Section MANAGEMENT 19 -Your Healthcare Team 23 - Overview of ALS Management Issues 3 - General Description 23 - Mouth and Throat Problems 3 - Types of ALS 24 - Symptoms that Affect Daily Living 4 - Symptoms, Signs and Diagnosis 25 - Mobility -
46 L Nursing2015 L Volume 45, Number 10 46 L
46 l Nursing2015 l Volume 45, Number 10 www.Nursing2015.com Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved. 2.0 ANCC ALCONTACT HOURSS Amyotrophic lateral sclerosis: What nurses need to know By Tamara L. Bellomo, MSN, RN-BC, and Lucille Cichminski, MSN, RN A MOTHER OF THREE teenage children, Mrs. is one of the most common neuromuscular dis- S, 49, presented to her healthcare provider eases in the world. This rapidly progressive, fatal with bilateral leg twitching and weakness, dif- neuromuscular disease involves the degeneration ficulty swallowing, and fatigue that’s worsened and death of the upper and lower motor neu- over the past few weeks. While she was on her rons.1 This article discusses the diagnosis and daily morning walk, she tripped and fell. She treatment of ALS and how nurses can help their experienced a small laceration to her leg, patients deal with the difficult diagnosis and find prompting her visit to the healthcare facility. the resources they and their families need. Her husband said that she’d had periods of slurred speech over the past few months as Who’s affected? well. She was alert and oriented, and her vital An estimated 20,000 to 30,000 Americans are signs were all within normal limits. living with ALS, and about 5,000 new cases After an exam, her healthcare provider are diagnosed each year in the United States.2 referred her to a neurologist who ordered This disease affects people of all ethnic, socio- magnetic resonance imaging (MRI), an electro- economic, and racial backgrounds.2,3 ALS most HOTOTAKE / P myogram, and a full bloodwork panel. -
A Guide to Amyotrophic Lateral Sclerosis (Als) Als Guide
ALS GUIDE A GUIDE TO AMYOTROPHIC LATERAL SCLEROSIS (ALS) ALS GUIDE INTRODUCTION Receiving a diagnosis of ALS can be overwhelming. You may day-to-day challenges of living with ALS. It is meant to experience many different emotions, and you may feel the complement your primary source of information – the need to learn more about how this complex disease will healthcare team managing your ALS. affect you. Some people want to know as much as possible, often right after diagnosis. Others prefer to take a gradual approach as changes occur and as the need for specific information develops. Take the approach that works best for you. Family members and close friends may also wish to learn more about ALS. The ALS Guide has been developed to provide practical information about ALS, its progression, and how people and families living with ALS can find solutions to help maintain independence. There are different versions of this guide. All of the content is the same except for the information about the local delivery of care and services, which can be different from province to province. The purpose of the ALS Guide is to help people and families with ALS plan for the physical, emotional, and financial challenges ahead and to offer tips and support for the ACKNOWLEDGEMENTS This ALS Guide is a project of the Federation Thank you to the Client Services Committee and treatment, research and provincial Council of ALS Societies across Canada – for their diligence and hard work in specific information. Client Services Committee. developing this Guide. Each provincial ALS We hope that the ALS Guide provides you Society developed content for segments The 2019 edition of the ALS Guide in English and your family with helpful information. -
Amyotrophic Lateral Sclerosis
Amyotrophic Lateral Sclerosis Thomas Farley, MA Research and Statistics Manager Arkansas Spinal Cord Commission August 2004 Amyotrophic Lateral Sclerosis (ALS) is a motor expectance after diagnosis is 3-5 years, with ten neuron disease, that is, a disease that affects the percent surviving ten years or more. skeletal muscle nerve cells. A network of nerves carries messages from the brain, down the spinal People who develop ALS are usually between the cord and out to various parts of the body. Included ages of 40 and 70 with an average age at diagnosis in this network are motor neurons which carry of 55. There are 20% more men than women with messages to the skeletal muscles. In ALS, these ALS at younger ages; however, as age at diagnosis nerves progressively degenerate and eventually increases, the proportion of men and women die. As a result, the skeletal muscles do not receive equalizes. the nerve signals they need to function properly and the muscles gradually atrophy or waste away There are two known forms of ALS: sporadic and from lack of use, leaving parts of the body para- familial. lyzed. The sporadic form accounts for 90% of all cases. “A-myo-trophic” is derived from the Greek What causes it to appear is unknown and its risk language meaning “no-muscle-nourishment.” factors are unknown. Lateral refers to the area of the spinal cord where the muscle nerves are located. Sclerosis refers to The familial or inherited form makes up the nerve damage through hardening or scarring. remaining 10% of cases. Families that have ALS appearing more than once in their family tree are ALS is frequently referred to as “Lou Gehrig’s in this category. -
2018 National ALS Registry Annual Meeting Executive Summary
ATSDR’s Annual ALS Surveillance Meeting Summary Report August 1-2, 2017 2018 National ALS Registry Annual Meeting Executive Summary The cause(s) of ALS (Amyotrophic Lateral Sclerosis) remain unknown for 90-95 percent of those diagnosed with the disease and there is still no cure. The Agency for Toxic Substances and Disease Registry (ATSDR) established the National ALS Registry to determine how many people in the US are living with ALS, to describe the demographics of ALS patients, and most importantly to examine the risk factors for ALS. Although the Registry’s primary purpose is to capture cases of ALS, the Registry does a lot more than just count cases. The Registry is also: Funding ALS research, Collecting specimens from Registry enrollees through the National ALS Biorepository, Connecting patients with researchers recruiting for ALS clinical trials or epidemiological studies, Obtaining etiologic data from Registry enrollees through 17 different online risk factor modules such as occupational history, military history, residential history, history of traumatic brain injury (TBI), Providing data and biospecimens to scientists to further ALS research. The National ALS Registry Annual Meeting was held in Atlanta on August 7-8, 2018. There were 51 attendees, including persons living with ALS, neurologists, researchers, representatives of national ALS organizations, representatives of pharmaceutical companies, Registry staff, and other ALS experts. Background, Methodology, and State of the Registry Because ALS is a non-notifiable condition, CDC does not receive reports from states of the occurrence of ALS, as it does for most communicable diseases. The novel methodology developed by ATSDR for identifying newly diagnosed ALS cases uses data from national administrative databases (i.e., Medicare and the Veterans Administration) in addition to the information entered into the online Registry web portal by persons living with ALS. -
Group Statement
May 25, 2021 ALS Organizations Double Down on Their Support for Reintroduced Legislation That Will Accelerate Research and Encourage Access to Critical Investigational Therapies for Those Living with ALS. Today, leaders in the House of Representatives and Senate reintroduced the Accelerating Access to Critical Therapies for ALS Act. The ALS Association, I AM ALS, and the Muscular Dystrophy Association (MDA) endorse the revised legislation with this statement: “The Accelerating Access to Critical Therapies (ACT) for ALS Act builds new pathways to fund early access to ALS investigational therapies, accelerates ALS and rare neurodegenerative disease therapeutic development through a public-private partnership, and increases research on, and development of, interventions for rare neurodegenerative diseases through a new Food and Drug Administration (FDA) research grants program. The ALS Association, I AM ALS, and the Muscular Dystrophy Association endorse this legislation that is a paradigm shift in how therapeutic development, access to treatments, and research has been approached in a fatal, fast- progressing disease like ALS. The ACT for ALS will authorize $100 million a year over a five-year period to: (1) create a new grant program that funds access to investigational ALS treatments currently in development from small biotechnology companies for those patients who cannot participate in clinical trials, while concurrently supporting a research objective on how these investigational treatments impact the disease; (2) establish a Health -
Drug Development for Amyotrophic Lateral Sclerosis Guidance for Industry
Drug Development for Amyotrophic Lateral Sclerosis Guidance for Industry August 2017 Contents I. INTRODUCTION ................................................................................................................ 1 II. BACKGROUND ................................................................................................................... 2 III. BENEFIT RISK...................................................................................................................... 5 A. General comments .................................................................................................................. 5 B. Evidence of patient and caregiver preferences ....................................................................... 5 C. Implications of patient risk/benefit preferences in ALS ......................................................... 7 1. Alternative endpoints........................................................................................................... 7 2. Placebo control arm ............................................................................................................. 8 3. Threshold for statistical significance ................................................................................... 9 4. Method of delivery ............................................................................................................ 10 5. Role of expanded access and accelerated approval ........................................................... 11 6. Patient protection and need for informed -
Annual Report 2015.Indd
Amyotrophic Lateral Sclerosis Society of Alberta Annual Report 2014 MISSION The Amyotrophic Lateral Sclerosis Society of Alberta is dedicated to making each day the best possible day for people living with and affected by ALS. We do this by providing support, facilitating the provision of care, promoting awareness, helping find a cure, and advocating for change. VALUES RESPECT We respect the rights, responsibilities, and uniqueness of everyone that we work with and who receive services from the ALS Society of Alberta. CARING We demonstrate compassion by listening and providing responsive and practical support. SERVICE We serve the needs of people affected by ALS in a fair and equitable manner. We are committed to the continuous improvement of our Society for the betterment of people affected by ALS. ACCOUNTABILITY We are responsible for our decisions and actions on behalf of the Society. We demonstrate due diligence in fulfilling our commitments to people living with ALS, their families and friends, our volunteers, donors, and all others who help us support people with ALS. PASSION We demonstrate a strong, emotional enthusiasm in our endeavours to make a positive difference in the lives of people affected by ALS. We communicate this enthusiasm to encourage others to share in our vision. QUALITY OF LIFE We strive to make every day the best possible day for people living with and affected by ALS by providing the highest level of support and services possible. BOARD OF DIRECTORS Tara Pentney Directors Chair Retired Heather Haddow Tracey Wallace, CHRP Human Resources Vice President, Human Resources Jan Desrosiers Mount Royal University ATCO Group Vice Chair Cathy Martin Dr. -
2020-ALS-Mission-Toolkit Web.Pdf
OUR MISSION OUR MISSION TABLE OF CONTENTS OUR MISSION Our Case for Support . iv Annual Impact . v Our Vision and Mission . vi CHAPTER 1: RESEARCH The ALS Association Research Program The ALS Association Research Program . 1–1 Research . 1–5 Our Strategic Initiatives . 1–5 Infographics Current Projects . 1–13 Accelerating the Search for a Cure . 1–14 Research By the Numbers . 1–15 Research Strategy . 1–16 Funded Research . 1–17 Scientific Focus Areas . 1–18 Advances in ALS Research . 1–20 Research Initiatives The ALS Association’s ALS Roundtable Program . 1–22 ALS Voice of The Patient Report . 1–24 ALS Focus Survey Program . 1–26 Research Staff . 1–28 CHAPTER 2: CARE SERVICES How We Work Summary . 2–1 How We Work . 2–2 Chapter Membership . 2–4 ii How We Support Clinical Care Supporting Clinical Care . 2–11 Certified Centers . 2–14 Where We Support Care . 2–15 Impact & Resources Care Services Impact . 2–20 Filling the Gap . 2–21 Education — Living with ALS: General Scope . 2–22 Education — Living with ALS: Medical Resources . 2–24 Assistive Technology — Assistive Technology in the ALS Space . 2–26 Children’s Programs and Resources . 2–28 The Jane Calmes ALS Scholarship Fund . 2–32 ALS Association Care Connection . 2–33 Care Services Staff . 2–34 CHAPTER 3: ADVOCACY Introduction To ALS Advocacy Introduction . 3–1 History of ALS Advocacy . 3–2 History of ALS Advocacy: Timeline . 3–3 Advocacy Action Advocacy Guiding Principles . 3–5 How We Advocate . 3–6 Priorities, Impact, and Coalitions ALS Guidance . 3–10 Advocacy Impact . -
A Er the Wildly Successful Ice Bucket Challenge
RESEARCH FEBRUARY/MARCH 2015 BY GINA SHAW Azer the Wildly Successful Ice Bucket Challenge ~e Ice Bucket Challenge raised big bucks on social media. Now, the ALS Association tells us where that cold, hard cash is going. As snowstorms and icy winds batter much of the country, it's hard to imagine willingly pouring a bucket of ice water over your head for any reason. But last August—when temperatures were much more forgiving—that's exactly what about 3 million people did. In an astonishing example of the power of social media, a July 31 dare from former Boston College baseball player Pete Frates, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2012, quickly went viral. The dare? Dump ice water on your head within 24 hours of being challenged or donate $100 (or whatever amount you could afford) to the ALS Association or another organization supporting ALS research. Pretty soon, the Ice Bucket Challenge meant dumping ice on your head and donating money, and everyone from your neighbor's preschooler to Bill Gates (with a custom-built ice douser), Oprah Winfrey, Jon Bon Jovi, and entire casts of Broadway shows were doing it—and posting their videos online. Even 86-year-old Ethel Kennedy took the challenge. (President Obama donated but declined the ice; actor Patrick Stewart posted a video of himself writing a check.) In La Jolla, CA, prominent ALS researcher Don Cleveland, PhD, who pioneered a novel therapy that turns off the defective genes that contribute to neurodegenerative diseases, watched the online commotion with skepticism.