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.

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

Guest Post: ALS Can Not Take Away My LOVE

By Nanci Ryder
Living with ALS since 2014

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

Nanci Ryder, a renowned Hollywood publicist and co-founder of BWR Public Relations, was diagnosed with ALS in 2014. Since then, she has worked tirelessly to raise public awareness about ALS, and to advance the search for effective treatments and cures for ALS, with the help of her many friends and supporters. Along with her family and friends, like Renée Zellweger and Courteney Cox, she has participated in the Los Angeles County Walk to Defeat ALS as “Team Nanci”, raising over $690,000 in support of the ALS community. She has received many awards for her awareness and fundraising efforts, including from the Publicists Guild, The ALS Association, and The ALS Association Golden West Chapter.

The following is Nanci’s 2018 ALS Hero Award acceptance speech at the LA Walk to Defeat ALS. It was read by her friend, Don Diamont from CBS’ The Young and the Restless and The Bold and the Beautiful, as Nanci is no longer able to speak on her own.


Wow… it is times like this that I really, truly miss cursing out loud.  But since this is a family-friendly event, it is probably best for all that I cannot.

After four years of living with ALS, there are many things I cannot do now.  But there are many that I can.

I can imagine… no… I can remember what it was like to say my own words, to move when I wanted, to taste coffee, to laugh out loud. I can feel the itch on my nose that needs to be scratched by another’s hand. And I can hear the voice of the first person who started to speak slower to me, as if I was hard of hearing.  They were lucky that I can no longer throw things at them.

They don’t call ALS progressive and devastating for nothing.

But I also can remember how awestruck I was when people gathered around me in support…  can feel the warmth when I look at the faces of so many people cheering at me for being “brave” – can hear the words from friends and even strangers telling me, “You are not alone.”

Continue reading Guest Post: ALS Can Not Take Away My LOVE

Guest Post: #VoiceYourLove for the People Who Matter Most

By Ryan Farnsworth
Living with ALS since 2015

A sad update about #VoiceYourLove ambassador Ryan Farnsworth: It is with heavy hearts that we share the news that Ryan Far died the evening of February 19, surrounded by his family. As active ambassadors of The ALS Association’s mission and vision, Ryan and his family selflessly moved us closer to our vision to create a world without ALS. Read more here.

This is the second in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. You can learn more about Ryan’s work as a writer, poet, inspirational speaker, and personal reflections as a person with ALS through his blog/YouTube Channel and through his book of poetry, “Seeds of Light Sown“.


Like many people, I used to think of myself as a sum of many integrated experiences, interests, and relationships. I’m a son, a brother, a nephew, and a friend. I am a writer, a poet, and an inspirational speaker. I am a lover of nature and meditation, a singer of songs, and a student of the world. I am also a person living with ALS.

I was diagnosed with ALS in 2015 at the age of 29. Since that time, I have been on quite a personal journey. The physical limitations of living with the disease are challenging. But, in my opinion, it is the emotional and mental components that are the true tests.

Continue reading Guest Post: #VoiceYourLove for the People Who Matter Most

Guest Post: A True Love Story

By Stephen Kauffman
Living with ALS since 2012

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


Before I was diagnosed with ALS, I didn’t know much about it – just that it was a debilitating disease. I was 27 years old and had no idea what to expect. I certainly didn’t plan for how much love it would bring into my life.

My parents and my sister were just incredible. They helped me maintain my independence and encouraged me to keep working and living my life, while navigating through the challenges of the disease.

My dad also joined the volunteer leadership for The ALS Association, to help raise awareness and support for others in the ALS community. Their love and belief in my abilities was so important to my sense of self and autonomy as a young man.

Then, I met Jeni in 2014 through an online community that we were both a part of. Our interactions started small through email conversations, text messages, and phone calls. We discovered we shared many common interests. Our communications with each other became almost daily and I found myself having strong romantic feelings for her.

Continue reading Guest Post: A True Love Story