Social distancing and stay-at-home orders in response to the COVID-19 pandemic are upending many facets of daily life. In recognition of Occupational Therapy Month, we checked in on ways this critical piece of multidisciplinary care can continue during quarantine and innovative ways telehealth can be adopted by occupational therapists.
Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.
Stay-at-home orders in response to the COVID-19 pandemic have upended many aspects of life, not least of which is volunteerism. And while the number of people volunteering has been declining in recent years, those who do volunteer are finding unique ways to stay engaged despite the coronavirus.
The ALS Association is excited to announce $2.5 million in grants to help develop promising new treatments for people living with ALS.
The grants are supported by the Association’s Lawrence and Isabel Barnett Drug Development Program, which supports drug discovery research in both academia and industry to develop new drug therapies and test them in a preclinical setting while moving those therapies closer to clinical use.
National Volunteer Week kicks off today. The weeklong celebration of volunteers began in 1974 and honors the people who come together and volunteer their time and resources to solve some of the world’s greatest problems.
Until he was diagnosed, Bob Palucki didn’t really know anything about ALS. “It really didn’t affect anybody in my family,” he says. “We’ve come so far in all the different medicines for all the different diseases and to think that we’ve got a disease as terrible as this and there’s no cure for it, there’s not even anything that can stop it from progressing.”
The ALS Association joined with 32 consumer and patient advocacy organizations in calling on Congress to enact legislation in response to the COVID-19 pandemic that protects and expands access to quality, affordable health insurance.
The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.
With congressional leaders scheduled to begin work on additional stimulus legislation in response to the COVID-19 pandemic, The ALS Association is continuing to push to include protecting access to noninvasive ventilators (NIV) and to making sure people with ALS can access their Social Security Disability Insurance (SSDI) in the coronavirus response packages.
Tom Mountin’s ALS diagnosis came as quite a shock in August 2016. “Before that, I was a tax attorney and thinking about retirement and all of a sudden, oh, I guess we're going to accelerate this retirement,” he said.
ALS Association chapter executives from across the country held more than 250 meetings with members of Congress Wednesday as part of the Association’s annual “fly in” advocacy push. While the meetings generally occur in-person in Washington, D.C., this year’s discussions shifted to virtual platforms in response to the ongoing COVID-19 pandemic and emerging social distancing and shelter in place rules across the country.
The ALS Association is excited to announce $1.4 million in grants to help develop technology that will enhance the quality of life for people living with ALS. The funding supports research in fields ranging from assistive communications and noninvasive ventilation to wearable sensors and a brain-computer interface.
The ALS Association is accepting applications for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information.
Steve Kowalski was active and healthy in 2017 when he says he noticed his toes weren’t working quite right. That, coupled with a few inexplicable falls, led him to get it checked out. After a two-and-a-half-hour doctor’s visit, he was diagnosed with ALS.
In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits. These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service.
Target ALS and The ALS Association recently announced a new partnership committed to the discovery of biomarkers for ALS. Structured as a precompetitive initiative between scientists in academia and the pharmaceutical/biotech industry, Target ALS and The ALS Association will fund two projects to better understand the chemical and physical structure of the TDP-43 protein, which is present in most cases of ALS.