For ALS Professionals |
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Dear ALS Professionals,
During my 12 years as Director of Care Services for The ALS Association Arizona Chapter, I conducted home visits, facilitated support groups, and served on four ALS clinic teams. As I was leaving my position, the family of one of my PALS asked if I’d be interested in translating my real-world knowledge into a trusted, user-friendly website that would help families navigate the ongoing challenges of ALS. The result is Your ALS Guide. |
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This website addresses fundamental topics like care, support, insurance, and equipment and goes into greater depth in our educational guides. We have filmed over 200 educational videos and continue to actively develop new content with ALS professionals and the greater ALS community. We hope this site will help families make informed decisions, develop support networks, connect with resources, save money, and experience a better quality of life.
We encourage you to share our resources with the families you serve. Below you will find links to some of the guides and content they may find helpful. We can also mail you physical flyers that you can hand out or include in patient packets.
Please feel free to email me at [email protected] with any questions, flyer requests, or thoughts on how we could collaborate and support you.
Thank you for all you do,
Kim Hughes
Content Director
Your ALS Guide
We encourage you to share our resources with the families you serve. Below you will find links to some of the guides and content they may find helpful. We can also mail you physical flyers that you can hand out or include in patient packets.
Please feel free to email me at [email protected] with any questions, flyer requests, or thoughts on how we could collaborate and support you.
Thank you for all you do,
Kim Hughes
Content Director
Your ALS Guide
Newly Diagnosed Guide
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This guide walks families through the most important things they need to know, from diagnosis to next steps to planning ahead. It includes dozens of video clips with Dr. Richard Bedlack and Stacey Asnani, MSW, from the Duke ALS Clinic. Visit guide.
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ALS Clinics Directory
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We host the most comprehensive, up-to-date directory of ALS clinics in the United States. Families can search by state for clinics that are independent or affiliated with The ALS Association, Muscular Dystrophy Association, or VA. Visit directory.
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ALS Respiratory Guide
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This highly visited guide educates families about ALS respiratory symptoms, support, and devices such as bilevels, ventilators, and cough assist machines. Families will find trusted information, helpful tips, and video clips with experts. Visit guide.
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ALS Power Wheelchair GuideThis educational guide on tilt-and-recline power wheelchairs covers qualifying and ordering, insurance coverage, home accessibility, tilting and reclining, alternate controls, adjustments, accessories, transportation options, and more. Visit guide.
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ALS Braces Guide
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This guide educates families about neck braces, wrist braces, hand splints, and ankle foot braces (AFOs). The guide includes videos and equipment demos with a Certified Prosthetist-Orthotist who has fitted hundreds of ALS patients for braces. Visit guide.
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ALS Self-Care
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This section of our website encourages PALS to practice self-care so they can remain more independent and have a better quality of life. Topics include sleep, nutrition, conserving energy, range of motion, self-advocacy, and driving safety. Visit section.
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About ALSThis section educates families about the disease through straightforward text and video clips with Dr. Bedlack. Topics include symptoms, diagnosis, progression, causes, clinical trials, approved drugs, and alternative treatments. Visit section.
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For Caregivers
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We have a dedicated section that speaks directly to primary ALS caregivers. Topics include coping, self-care, respite care, and how to ask for help. Laura, a former caregiver, shares her insights and tips for coping and caregiving. Visit section.
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Downloadable Guide Flyers
Click on the images below to download and print PDF flyers for the following guides. You can also email us if you’d like to receive two-sided glossy flyers in the mail.
