“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.”

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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. 

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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

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“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.

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March 17 Update from ALS Association President and CEO Calaneet Balas

Members of the ALS community,

I want to provide you with an update on how The ALS Association is serving the ALS community as COVID-19 progresses. We know this is a concerning time for many and we want to assure you that we are continuing our urgent mission to find treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Continue reading March 17 Update from ALS Association President and CEO Calaneet Balas

ALS Association Joins Coalition Fighting to Protect Vulnerable Populations in Face of COVID-19

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. 

People with pre-existing conditions are at increased risk of infection and adverse health outcomes from COVID-19. For this reason, it is essential that any legislative package taken up in the Senate ensures that the health care system has adequate capacity to provide necessary care to patients with pre-existing conditions and robustly addresses public health needs. 

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“You Got to Take Every Day with Grace and Dignity”: Liz Murray on Living with ALS

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. 

Liz spent her career as a nurse in a VA clinic where she cared for numerous ALS patients over the years. She says the experience informed her suspicion that her symptoms were consistent with the disease even before her diagnosis was confirmed. 

Continue reading “You Got to Take Every Day with Grace and Dignity”: Liz Murray on Living with ALS