What People With ALS Want You to Know About ALS

Challenge Me to Educate the World About ALS

We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.

“Challenge Me” is a concept well known to people living with ALS who face an insidious foe every single day. Pat Quinn, who co-founded the ALS Ice Bucket Challenge with Pete Frates in 2014, talks about affirming his readiness to take on whatever ALS may throw at him that day. He says “Challenge Me” captures the spirit and determination of people with ALS.

We asked some other folks in the ALS community what they want you to know about ALS. Here is what they said.

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New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS.

The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.

“Jane amazed me every day,” Mark says. “She was a fighter who battled three illnesses in a row – a silent heart attack, breast cancer, and then ALS. After she died, I began to think of ways to honor her courageous spirit and compassion. The idea of a scholarship program resonated with me because Jane was always keen on the lifelong benefits provided by education.”

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Challenging Youth to Join the Fight

The ALS Association is launching a campaign to engage kids and teenagers in the fight against ALS, issuing the ALS Youth Challenge and celebrating the first-ever ALS Youth Action Day.

Our chapters across the country will be partnering with youth organizations in their communities to identify future activists and philanthropists who will help to defeat ALS by accepting the ALS Youth Challenge.

On May 19, we will recognize the first annual ALS Youth Action Day, a day where kids can set aside time to take the ALS Youth Challenge, raise money and awareness for the fight against ALS, and spread the word on social media.

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ALS Disability Insurance Access Act Reintroduced in 116th Congress

Bipartisan Legislation Eliminates Five-Month Waiting Period for SSDI Benefits for People Diagnosed with ALS

The ALS Disability Insurance Access Act was reintroduced in the 116th Congress this week as S.578 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill in the House as H.R.1407.

The bill was introduced with strong bipartisan support from 40 senators and 90 representatives.

Last year, thanks to your advocacy, the bill gained considerable momentum. Within three months of the 2018 National ALS Advocacy Conference, more than one-third of Congress supported the bill. Within seven months, for the first time ever, the bill was considered for passage through the Senate via unanimous consent.

Multiple research studies indicate that people who have served in the military are at far greater risk of developing ALS and dying from the disease than those with no history of military service.

The ALS Association is honored to work with more than 20,000 people with ALS annually, including active duty military and veterans, through our nationwide system of chapters.

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Guest Post: Love Changes Everything

By Lorene Lee
Living with ALS since 2010

This is the fifth in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Lorene composed this message using assistive communication technology with a visual-tracking system. She typed the words, one letter at a time, using her eyes.

In my first attempt to write this letter to you, I had written a few paragraphs on my marriage and life. But later, I got to thinking it sounded just like any other couple, going through the usual everyday problems. The next morning, I was going to change everything. When I got to my device, it was erased. What happened is beyond me. This is a problem I sometimes face with this computer. So I will begin again with what I really want to express.

When I first met Tony in 1982, he really helped me to blossom (he does not acknowledge it- but it is the truth)! My husband Tony and I have been married for 32 years and raised our two children, Andrea and Brian, together. Our home is my sanctuary and I am happy that we have had so many happy memories here. Like when my daughter came tearing down the sidewalk in her Big Wheel, at age 5. And when our son got in serious trouble around age 6, with tears flowing, he sobbed and said, “Don’t kick me out! I need a place to live, too!”.

Fast forward to getting them ready for prom nights and having so many family and friend gatherings. There is a lot of heart around my house.

When I was first diagnosed with ALS in 2010, I knew it was going to be serious because of all the different tests I took. So, in a sense, I was prepared for bad news. It was Tony that took it so hard. He had lost both his sister and his father earlier that same year, and we were also caring for his 16 year-old niece. It was an unbelievable time in our story.

By 2012, I had lost my ability to speak and now rely on a speech-generating device with an eye-tracking system to communicate.
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Guest Post: Cherish Every Moment with Those You Love

By Miles McConnell
Living with ALS since 2015

This is the fourth in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign.

This time of year brings memories of two important days in my life.

The first memory is from February 13, 1999, the day I proposed to my incredible wife, Dubie. We had first connected upon the strong suggestion of my best friend, who said that there was a girl that I had to meet that day. He was right and ever since I did, I was sure that we would be together forever.

After a few years of dating, the time finally came to make it permanent. I asked her to join me on our favorite hike, but (for reasons I will reveal later), I had to cancel at the last minute. We made the same plan for the next day, yet again, I needed to cancel. The following day, I attempted again but Dubie said she was “busy”. I did my best to convince her otherwise but she had had enough of my cancellations. I was left with no choice but to go to her office and tell her that I wasn’t going to leave until she said she would at least have dinner with me that evening in my San Francisco apartment. Finally, much to my relief, she relented.

We had dinner, during which I tried to lighten the mood by steering the conversation toward “Remember when…” and talked about funny and memorable moments we had shared. After dinner, I made dessert and to my surprise upon returning to the living room, she had turned on the TV and was falling asleep! I woke her up with dessert and an orchid plant to which I tied a wax mold of a ring I had designed for her. It took her a few moments to realize what was happening. By then, I was down on one knee, and proposed. She cried, said yes, and that was the beginning of our incredible adventure together.

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Looking Ahead: The Carmen Schentrup ALS Research Fund Inspires Hope and Progress Toward a Cure

Carmen Schentrup had a dream: a world without ALS. Her career aspiration was to become a medical researcher and to be part of The ALS Association’s work to cure ALS.

Tragically, Carmen’s life was cut short in the horrific Parkland shooting last year. However, her dream to contribute to a cure is being realized in a significant way.

Carmen’s birthday is today, February 21. She would have been 18 years old.

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