In recent years Giving Tuesday has emerged as a preeminent day in late November for everyone around the world to commit to charitable giving as a way to give back to those in need during a season defined by giving. On May 5, in recognition of the crisis charitable causes face in the face of the global pandemic and economic shutdown, a new opportunity to come together in support of your community will be held: #GivingTuesdayNow.
May is ALS Awareness Month. Of course, this year is different than past years as the world has changed significantly in the face of a global pandemic. However, ALS doesn’t stop and neither will we. During the month of May we have a full calendar to increase awareness of ALS and of the severe physical, emotional, and financial burdens it creates for people living with the disease and their families. We’ll be talking about the disease and its burdens in the context of the COVID-19 public health crisis, which exacerbates the difficulties people living with ALS already face in number.
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.
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.”
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.
Like most grandparents, Lesley Krummel took great joy in picking up her grandkids. And that loss is one of the most challenging aspects of her ALS progression.
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.
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.
When Christian James was heading to the neurologist at the University of Cincinnati Medical Center, his son, a student at UC at the time, met up with him for the appointment.
On March 5, The ALS Association launched a weekly podcast, Connecting ALS, that will shine a national spotlight on the people, research, and policy issues central to the fight against ALS.
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.”
