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ALS Association
Expanded Access: What is It, and Who’s Eligible?
Expanded Access, or “compassionate use” as it is often referred, allows patients with a terminal diagnosis early access to new therapeutics that show promise – even if the patient is not involved in the ongoing clinical trial – or if the medication has not yet been approved by the FDA.
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ALS Association
ALS Focus Results Show Benefits to Telehealth Access
People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.
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ALS Association
Q&A: How to Begin a Discussion Around Genetic Counseling and Testing
The ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND and safeguards against genetic discrimination. Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge.
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ALS Association
Health Disparities and ALS
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
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ALS Association
Challenge Me to Make the Impossible Possible
Watching my mother struggle to interact with the world as her ALS progressed was extremely difficult for our family, and for me personally. Her struggle inspired me to find solutions that could help people like my mother better interact with computers and their environment, even after they have lost almost all of their ability to move. I had the motivation to advance technology in a way that would bring a new quality of life to people living with ALS under Steve Saling's motto that until medicine proves otherwise, technology is the cure.
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ALS Association
Respiratory Strength Training Deemed Safe and Feasible in ALS Case Study
Dr. Emily Plowman, one of our Clinical Management Grant awardees, recently published a promising case report on a person with early-stage ALS who has been participating in a mild-intensity respiratory strength training program. The individual has been doing the strength training program with Dr. Plowman and her team at the University of Florida in Gainesville, Florida, over the past 24 months.
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ALS Association
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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ALS Association
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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ALS Association
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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ALS Association
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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ALS Association
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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