When the San Francisco 49ers and Kansas City Chiefs take the field for Super Bowl LIV, more than 100 million viewers are expected to tune in from homes, pubs and Super Bowl watch parties across the country. While the game itself is considered an iconic signature sports event for most Americans, many of us also identify this game with the smorgasbord of snacks that generally accompanies game watching. After all, a staggering 1.4 billion chicken wings are expected to be consumed during the big game this year, and the day is one of the biggest days for pizza sales every year.
Our ALS support groups are designed with one thing in mind – enhancing quality of life and supporting families impacted by ALS regardless of where they live. Addressing the unique challenges the disease presents, they follow best practices and join people together who are dealing with similar difficult circumstances.
Tommy May, a member of The ALS Association National Board of Trustees, published a column in Morning Consult, a leading digital media platform among lawmakers, today urging Congress to protect access to noninvasive ventilators. May was diagnosed with ALS in 2005. He has used a ventilator since 2013 when his disease progression made it difficult for him to breathe on his own.
This week, Time reported that flu patterns have been unusual this season, which means it is a good time to talk about ALS and the flu. People with ALS often experience a wide variety of challenges related to weakened swallowing and respiratory muscles, including difficulty managing saliva, coughing, and clearing secretions. Consequently, it’s imperative to take steps to avoid any respiratory infections, especially the flu.
This week The ALS Association launched a major initiative, investing $3 million ($1 million per year over three years) in the first ever ALS Platform Trial. The trial will take place at the Sean M. Healey & AMG Center for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium (NEALS).
This article was originally published on the blog of the ALS Society of Canada on November 15, 2019, with kind thanks for their permission to reuse it.
The first thing one notices upon walking into Jeff and Darlene’s airy bungalow is the feeling of warmth and love that reaches into every corner: it’s present in the family photos that adorn the walls and the tasteful trinkets carrying messages of friendship and hope. And it’s a stark contrast to the second thing that’s evident: the soft, motorized whir of the breathing machine that keeps Jeff alive. It’s a constant reminder of the thin line between life and death – a line with which Jeff and Darlene are all too familiar.
The ALS Association and 23 partners that represent millions of patients across the country released a statement strongly supporting the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month’s Texas v. United States ruling. The ruling endangers patient access to adequate, accessible and affordable health care.
While recent years have brought a wealth of new scientific understanding regarding the physiology of ALS, there is still some mystery and misinformation surrounding the disease.
After a lifetime of participating in and leading two-a-day practice sessions, as a running back at the University of Alabama and the NFL, and later becoming a strength and conditioning coach in the NFL, Kerry Goode knew something was wrong when he couldn’t pick up a box.