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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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.

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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.

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Fran McClellan Awarded the Lawrence A. Rand Prize

At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize.

The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.

Fran is a passionate advocate and provider for people living with ALS. She serves the ALS community as both a nurse coordinator for our Certified Center of Excellence at the Louis Stokes Cleveland VA Medical Center (Cleveland VAMC) and a board member for our Northern Ohio Chapter.

Keep reading to learn more about Fran and the work she does in the fight against ALS.

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Guest Post: ‘Remember Me as Being a Help to Others’

By Rick Fisher

My interest in photography began when I was the high school yearbook photographer. I really don’t know why I volunteered because, at the time, I didn’t even own a camera.

My father was a big 8mm movie guy, but he never used a still camera. After I was selected as the yearbook photographer, my father bought me my first 35mm camera.

Between high school and 1998, I was a casual amateur photographer. When digital was introduced, I got excited about the technology and renewed my interest.

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A Husband and Caregiver’s ‘ALS Experience’

Ronnie selflessly cared for Linda, his wife of 20 years, throughout her fight with ALS.

“The hardest thing anyone can experience is watching a loved one slowly die [when you] can’t do anything about it,” he said. “It doesn’t matter what disease they have.”

He added, “ALS is [an] ugly disease. It slowly takes away the person we saw being able to take care of themselves and enjoy life. The sad thing is…there is no cure. The person who has ALS just slowly wastes away.”

Linda was diagnosed with ALS on April 16, 2012. She passed away less than 14 months later – on June 8, 2013.

“If it wasn’t for God, I couldn’t have made it through,” Ronnie said. “I pray every day for all the caregivers and have the utmost respect for them.”

He wrote “ALS Experience” after Linda’s death.

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