“People are Very Supportive and Very Helpful”: Tom and Susan Mountin on Living With ALS

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.

Before his diagnosis, all Tom knew about ALS was how to spell it. “The day I was diagnosed, I downloaded the biography of Lou Gehrig because I said, ‘I want to see what I’m in for.’” He says he drew inspiration from Gehrig’s service after his diagnosis and retirement with the New York City Parole Commission helping juvenile offenders. “He was surprisingly good at this, and people thought he did a whole lot of good for people.”

“So, I said, ‘Well that’s got to be part of the key with dealing with ALS is find something different than you’ve been doing and try to do some good.’ So that’s been my approach.”

Continue reading “People are Very Supportive and Very Helpful”: Tom and Susan Mountin on Living With ALS

How The ALS Association’s is Pursuing 2020 Public Policy Priorities During the COVID-19 Pandemic

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. 

Chief among the concerns of ALS advocates is making sure that legislation being drafted in response to the pandemic includes protections for people living with ALS and their caregivers, including protecting access to noninvasive ventilators and making sure people with ALS are not forced to wait five months to access Social Security Disability Insurance. 

To hear an in-depth discussion of how the Association is advocating during the pandemic, listen to the latest episode of Connecting ALS. 

Continue reading How The ALS Association’s is Pursuing 2020 Public Policy Priorities During the COVID-19 Pandemic

The ALS Association Furthers Commitment to Develop Technologies to Help People with ALS Live Better

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 grants are part of the Association’s Managing ALS Research Program, which funds research for improving clinical, psychological, and social management of ALS, focusing on both people living with ALS and their caregivers. This includes research in developing assistive technology, measuring patient/caretaker burden, and improving quality of life

Continue reading The ALS Association Furthers Commitment to Develop Technologies to Help People with ALS Live Better

The Jane Calmes ALS Scholarship Fund Kicks Off Year Two

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.

In its inaugural year, the fund awarded $225,000 in scholarships to 45 students nationwide whose personal or family finances were compromised by the financial burden of ALS. Continue reading The Jane Calmes ALS Scholarship Fund Kicks Off Year Two

Questions and Answers about COVID-19 and Its Impact on People with ALS

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. If you have questions, please email questions@alsa-national.org.

Also, if you would like to hear our panel discuss these issues on a podcast, please check out the March 19 episode of Connecting ALS at ConnectingALS.org.

Continue reading Questions and Answers about COVID-19 and Its Impact on People with ALS

Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

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 coverage applies to all Medicare-approved telehealth services.

The government temporarily waived restrictions on telehealth in Medicare fee-for-service to enable more seniors to access care from their own homes during the public health emergency brought on by the coronavirus. The provisions were included in the Coronavirus Preparedness and Response Supplemental Appropriations Act.

The telehealth waiver applies to treatment of all diagnosis during the Public Health Emergency, not just COVID-19-related visits.

Continue reading Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

“There’s Still A Lot of Life to Be Lived”: Steve Kowalski’s Story

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.

“I equate it to being hit by lightning on a sunny day, because it was kind of out of the blue,” he said. 

Steve was alone in his doctor’s office when he was diagnosed. 

“I just thought it was another doctor’s visit and didn’t want to involve anyone in my family to come with me. Just thought I’d go, get checked up,” he said. The doctor’s office was close to home, and Steve walked home reflecting on the diagnosis.

Continue reading “There’s Still A Lot of Life to Be Lived”: Steve Kowalski’s Story