​Trusted tips, resources, and information for
​your ALS journey

July 12, 2018

The Latest

Clinical Trial Grant Awarded to Find ALS Biomarkers
The Muscular Dystrophy Association awarded $750,000 to Massachusetts General Hospital to help accelerate ALS biomarker research.
Scientists Link Gene to ALS
A large-scale study led by a team of top international experts has definitively linked the KIF5A gene to ALS.
Webinar: Respiratory Treatment 
On July 10 at 1 pm ET, a doctor from Vanderbilt University will review respiratory treatment options, including when to begin, different devices, and the effects of each treatment.
Voice-Banking Technology Helps Ice Bucket Co-Founder Regain Voice 
Pat Quinn lost his voice to ALS, but Lyrebird's new technology has helped him use it again. "This takes speech tech to a whole new level," he said.
Funding Secured for Speech-Generating Devices
Congress passed the Steve Gleason Enduring Voices Act, which ensures Medicare and Medicaid coverage for speech-generating devices for ALS patients.

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ALS Power Wheelchair Guide – Coming Summer 2018

Your ALS Guide recently sat down with Andrew Heitz from Quantum Rehab for an interview and custom power wheelchair demonstration.

​Our upcoming guide will include an educational video series on power mobility options, features, and the ordering process.

Find your ALS clinic

Attending an ALS clinic can extend your life and improve your quality of life. A specialized medical team will meet with you, monitor your progress, and make recommendations. Your visits should be covered by insurance.

Apply for disability benefits

Most people with ALS qualify for Social Security and Medicare disability benefits. You do not have to be 65. These key benefits provide health insurance and a monthly income. There is a five-month waiting period.

Travel with ALS

Though it will take more patience and planning, you may still be able to travel. With a companion, you can catch a flight or take a road trip in a handicap-accessible van. Why not visit loved ones or explore a new destination?

Enroll in the ALS Registry

The National ALS Registry is a database that collects information from volunteers with ALS to help scientists learn more and work toward a cure. You can help make a difference by enrolling and filling out the short survey.


​SHARED TIPS

"As you accumulate more equipment to help with your quality of life, take a photograph of how it is intended to be set up. Print this out and place in a binder with simple instructions on how to operate. This will help anyone not familiar with the equipment know exactly how it should look. Additionally, have a regular refresher training for everyone in the family, especially if they don't operate it every day."

       Juan R.
       San Antonio, TX

About Us

Your ALS Guide is designed to provide clear information, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.
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​This website is dedicated to Myna Stroth and her courageous struggle with ALS. Myna’s brother Tom, nephew David, and former ALS Association Care Services Director, Kim Hughes, created this website for families facing similar challenges.