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.   

“COVID-19 makes our policy priorities all the more relevant,” said Kathleen Sheehan, vice president of public policy at The ALS Association. “The pandemic exacerbates the financial, emotional and clinical needs of the ALS community and it was imperative to let legislators know that, even if it meant modifying our conference to a new platform.”

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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.

It is critical that people with ALS and their family members be proactive and make plans to protect themselves in the event of a disaster. Making the conscious decision to be prepared takes work, but it is worth it. The more you do, the more confident you will be that you can protect yourself when the time comes.

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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. 

Kathy was diagnosed with ALS in 2018. Jim was diagnosed in 2012. It is a family tradition they don’t wish to preserve. 

“My father died in 1999, my sister was diagnosed in 2000, she lived until last year in October,” Cathy said. “I have an older sister who is living with ALS, Jim, who is living with ALS for eight years, and another brother Richard who was diagnosed a month ago. We have two cousins in our family who have it, both from different families, and we have nieces and nephews who are certainly running scared,” she said. 

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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. 

The Centers for Disease Control and Prevention is also encouraging people who are high-risk – like people living with ALS – to manage the increased stress that comes with this time of isolation – including finding ways to regularly connect with others, limit news consumption, and unwind when anxious feelings are looming. 

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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. 

“The great support of our existing and new investors from the US, Europe and Japan underscores the international nature of our mission,” said Kasper Roet, Ph.D., Chief Executive Officer of QurAlis. “We plan to use this funding to continue advancing ALS and FTD therapies for patients around the world who are in critical need of effective treatments.”

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“It Makes You Look at Life a Different Way.”: Chip Carton on Living with ALS

When Chip Carton arrived at his doctor’s office in 2008, he was 47 and feared the worst. 

“They had me go in for a brain tumor,” he said, “and the doctor came in and said, ‘Oh no, you don’t have brain cancer.’ So, I was elated.”

The doctor had more testing in store. ‘But I do want you go down the hall to the ALS clinic,’” Chip recalls.

Chip said he was completely unfamiliar with ALS at the time. 

“I was still just sitting on high,” he said. “Then the final person came in and said, ‘This must be a very hard and long day for you.’ And I said, ‘Why?’ ‘I just found out I didn’t have brain cancer.’”

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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.

In 2017, Bill Beaton, better known as “Papa,” began having some odd symptoms of weakness in his legs.  Like many people diagnosed with ALS, he went to his fair share of doctors and had many tests run, even a back surgery hoping to solve the problem.  Never in a million years did he and his family expect to finally hear the words, “You have ALS.”

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