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.
Letter to Congress calls for swift action to expand access to health care and facilitate social distancing. The ALS Association cosigned a letter with 27 patient and consumer organizations calling on Congress to act decisively to slow the spread of the coronavirus that causes COVID-19, particularly among vulnerable populations.
This is a rapidly evolving situation and The ALS Association will continue to update you on how we are serving the ALS community throughout COVID-19. For the most recent information about COVID-19, The ALS Association recommends visiting the CDC and the World Health Organization (WHO) websites.
In summer 2014, as the ALS Ice Bucket Challenge was raising unprecedented awareness and funds for the fight against the disease, Liz Murray did not know that she was about to become part of the ALS community. Her diagnosis was confirmed later that year.
We are getting enthusiastic feedback and questions about our partnership with Project ALS to fund a clinical research project for jacifusen, an experimental therapy being developed at Columbia University’s Eleanor and Lou Gehrig ALS Center for FUS-associated ALS. We thought it would be helpful to describe the strategy underlying the project.
For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC) and the World Health Organization (WHO).
Two days before her birthday in January 2018, Susan Hoerber was diagnosed with ALS. “I was symptomatic for about four years. I knew there was something terribly wrong,” she said. Susan first noticed her symptoms when she struggled to hold a fishing pole. “I was an avid fisherman and outdoors person,” she said. “That's the first time I got kind of scared and I went to the neurologist.”
Joel Shamaskin spent 30 years caring for others as a primary care physician before his ALS diagnosis rushed him into retirement. Over the course of his career he had cared for some patients who had the disease, so by the time he received confirmation of his diagnosis, he and his wife Ann, who was a primary care physician as well, felt like they already knew. But ALS hasn’t taken away his desire to care for others.
The ALS Association and Project ALS announced a joint two-year, $900,000 commitment to pilot a clinical research program for an investigational gene therapy for mutant FUS-associated ALS, at Columbia University’s Eleanor and Lou Gehrig ALS Center. This is the first step in developing a comprehensive strategy to treat multiple rare ALS genes.
Learning that you should consider a feeding tube can be overwhelming. It is a lot to take in, particularly in combination with the many medical issues that come with an ALS diagnosis. It is common for patients to be hesitant about it, but often, once they see the benefits of tube feeding, they often regret not making the decision sooner.
When the San Francisco 49ers and Kansas City Chiefs take the field for Super Bowl LIV, more than 100 million viewers are expected to tune in from homes, pubs and Super Bowl watch parties across the country. While the game itself is considered an iconic signature sports event for most Americans, many of us also identify this game with the smorgasbord of snacks that generally accompanies game watching. After all, a staggering 1.4 billion chicken wings are expected to be consumed during the big game this year, and the day is one of the biggest days for pizza sales every year.