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ALS Association
ALS Association’s 2020 National Advocacy Conference Goes Virtual
Not to be deterred by the COVID-19 pandemic, ALS Association advocates from across the country held more than 350 virtual meetings with members of Congress Tuesday, adapting the Association’s longstanding annual Advocacy Conference to ensure the safety of participants. Historically, upwards of 600 ALS advocates gather in the nation’s capital for days of face-to-face meetings with their elected representatives in the Congress and the Senate.
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ALS Association
Hurricane Season Starts Today. Are You Prepared for an Emergency?
Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. June 1 marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.
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ALS Association
Cathy Kettner and Jim Weber on Familial ALS, the Importance of Advocacy, and Who They are Fighting For
About 10 percent of all cases of ALS are due to genetic mutations and are inherited from a family member. If there are two or more family members with ALS, the disease is considered familial, and there is a 50% chance of passing that mutation on to each of his or her children. For siblings Jim Weber and Cathy Kettner, it’s the 50-50 proposition that brings them to the fight.
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ALS Association
Continuing to Cope with Anxiety and Stress During these Difficult Times
As states begin easing some of the stay-at-home orders put in place in response to the COVID-19 pandemic, people who are high-risk of exposure to the coronavirus are still urged to remain safely at home and to take continued precautions to distance themselves from anyone who may have been exposed to the virus.
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ALS Association
ALS Association Funded Research Attracts $42 Million in Private Funding
QurAlis, a biotech company focused on developing targeted therapeutics for ALS and a recipient of a $250,000 funding grant from The ALS Association in 2019, recently announced that it had raised $42 million in a Series A venture capital financing round to advance its research into ALS treatments. The private investment round brings the total amount raised by QurAlis to $50.5 million.
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ALS Association
Everyone Can Make a Difference in the Fight Against ALS
Meet Connor Way. Connor is your typical 8-year-old boy: he loves to play outside with his friends, go to school, and spend time with his family, especially his grandfather he calls “Papa.” But there’s something different about Connor’s story, his “Papa” had ALS.
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ALS Association
Challenging Our Youth to Join the Fight Against ALS
An ALS diagnosis is not only devastating to the person receiving it, but to their entire family, and kids are all too often the collateral damage. The disease forces many kids to pitch in as caregivers and often delay their educations. Kids who serve as caregivers often talk about feeling isolated and unsupported by their peer groups.
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ALS Association
Mother’s Day Q&A with Carianne Meystrik
Carianne Meystrik has been living with ALS for 22 years – all while raising 4 children. In honor of Mother’s Day, we reached out to Carianne to check in on her ALS journey and her family, and to get her reflections on the impact ALS has had on motherhood.
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ALS Association
Join our ALS Community for #GivingTuesdayNow
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.
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ALS Association
ALS Awareness Month: How our fight continues
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.
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ALS Association
Occupational Therapy and ALS: How It Can Work in the Telehealth World
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.
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ALS Association
“You Find an Inner Strength that You Never Knew You Had.”: Troy Fields on Living With ALS
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.
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ALS Association
The ALS Association Continues to Push Development of Novel Treatments
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.
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ALS Association
“Hope is in Enough of the People Being Concerned Enough to do Something about it.”: Bob Palucki on Living With ALS
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.”
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ALS Association
In memoriam: Remembering Dick Essey
The ALS Association mourns the passing and celebrates the life and legacy of Richard P. “Dick” Essey, who died recently at his home in San Francisco.
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