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

A Look Back: Our Largest-Ever Clinical Conference Re-Confirms We’re ‘All in This Together’

Every two years, hundreds of ALS health care professionals come together to discuss new trends, share best practices and guidelines, exchange ideas and successes, and talk about challenges and potential solutions. To capture the collaborative power of the 2018 event in Fort Worth, Texas – our largest-ever Clinical Conference, with more than 500 attendees – we put together a short video highlight reel.

“One of the beautiful things, I think, about the Clinical Conference is that everybody’s really all in this together and we’re all trying to do everything we can for the patients and their families,” Dr. Melinda Kavanaugh, MSW, LCSW with the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee in Milwaukee, Wisconsin, said.

Attendees of the three-day conference include physicians, speech-language pathologists, assistive technology professionals, physical therapists, occupational therapists, registered dietitians, respiratory therapists, nursing professionals, and social workers.

“The [Clinical Conference] is […] an exceptional opportunity for folks who are across disciplines, for people who are really hands-on, deeply engaged with patients and caregivers in the community [to] really learn from each other in a very non-intense or non-threatening environment,” Dr. Kavanaugh added. “Sometimes research symposiums can be pretty overwhelming.”

Continue reading A Look Back: Our Largest-Ever Clinical Conference Re-Confirms We’re ‘All in This Together’

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.

Continue reading Fran McClellan Awarded the Lawrence A. Rand Prize

Terry Bradshaw Teams Up with The ALS Association to Raise Awareness of ALS

Hall of Fame quarterback fulfills dying fan’s last wish that he become ALS spokesperson

Today we launched a new public awareness campaign featuring Hall of Fame quarterback and FOX Sports announcer Terry Bradshaw that raises awareness of ALS and the progress that has been made since the ALS Ice Bucket Challenge in 2014.

“ALS is a terrible disease that has taken far too many Americans, including several former NFL players,” said Terry. “I’m honored to be fighting for all those living with ALS and their family members. We desperately need the public’s support to keep the momentum going.”

Two of the videos released today feature Terry and Pat Quinn, who co-founded the ALS Ice Bucket Challenge five years ago.

Continue reading Terry Bradshaw Teams Up with The ALS Association to Raise Awareness of ALS

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.

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