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ALS Association
ALS Association Board Member Urges Congress to Protect the Right to Breathe
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.
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ALS Association
ALS and a Strange Flu Season
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.
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ALS Association
Through Sickness and Health: A Couple’s Love Perseveres in the Face of ALS
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.
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ALS Association
Five Myths about ALS
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.
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ALS Association
The ALS Association and coalition partners call for quick review of ACA by SCOTUS
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.

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ALS Association
Keep the Bus Moving: Kerry Goode’s Story
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.
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ALS Association
2019 Highlights in the Fight Against ALS
As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.

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ALS Association
"We Won't Let ALS Steal Our Joy"
Our home has always been filled with family, friends, and joyful celebrations during the holiday season. It’s a time to connect with loved ones and create lasting memories. After my dad was diagnosed with ALS in March of 2017, creating holiday memories became especially important for our family. The average life expectancy for someone with this disease is 2 to 5 years, so we understand that every moment we spend together is precious.
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ALS Association
Future of Affordable Care Act Uncertain After Court Ruling
Court Ruling leaves Affordable Care Act’s (ACA) provisions in place, including protections for pre-existing conditions for people with ALS and other Americans. But the court keeps the long-term future of ACA in limbo.
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ALS Association
Lawmakers Agree on Spending Bill that Fully Funds ALS Association Priorities
A 2020 federal spending agreement reached Monday between House and Senate negotiators would fully fund key spending priorities of The ALS Association and its advocates. ALS advocates have sent 13,800 letters and 3,600 tweets, and held more than 700 meetings in the past year to secure full federal funding of ALS research.
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ALS Association
NurOwn and the Therapy Development Process
The ALS Association, our partner ALS organizations, and the wider ALS community are all hopeful that several therapies currently in Phase 3 clinical trials will prove to be successful in slowing, halting, or reversing ALS. One of the therapies now in Phase 3 trials, NurOwn, has been the subject of considerable discussion on social media. Some of what is being stated on social media is unfortunately not accurate, and risks misleading people with ALS and their caregivers.
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ALS Association
ALS Roundtable on Ensuring Access to New Therapies for People With ALS
With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?
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ALS Association
How Gardening is Part of Caregiving: Bill Dodge’s Story
November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Throughout the month we have been sharing stories of caregivers in the ALS community. Caregiving is a full-time job, and many caregivers also maintain full time jobs while dealing with the financial and emotional stress that comes with being a caregiver.
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ALS Association
Caregiver Opens Up About ALS and the Holidays
Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding. Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.) We sat down with Jen earlier this year to talk about caregiving and how ALS impacts the holidays.
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ALS Association
Bride-to-be Caregiver Reframes Future with a Fiancé Living with ALS
Lynn Hogan became a caregiver early in her relationship her fiancé, Steve Ziegler. “On our first date we went out and he was sitting next to me and he said, ‘You might notice -- don't get weirded out or anything -- but you might notice some twitching, weird stuff going on with my arms. We don't know what it is yet. But one of the things it could be is ALS,’” she recalled.
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ALS Association
Groundbreaking ALS Voice of the Patient Report Submitted to FDA
The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.
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ALS Association
The Iron Woman Behind the Iron Horse
The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.
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ALS Association
Anthony Vick: "Faith Over Fear"
Anthony Vick spent 16 years serving his country in the Army and Air Force Reserves, including 10 years in the civil service. Vick says he was lucky to be able to serve his country, service that came to an end in 2017 when he was diagnosed with ALS.
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