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In Memory of ALS Hero Pat Quinn

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“Every August Until a Cure”

Pat Quinn was a native of Yonkers, New York and was diagnosed with ALS in March of 2013, just one month after his 30th birthday. Immediately after his diagnosis, Pat vowed to make a difference for others living with the disease. He fulfilled that promise, establishing himself as a leader in the ALS community, spreading awareness, raising funds for research, and becoming a champion for the cause.

In 2014, Pat co-founded the viral fundraising phenomenon, the Ice Bucket Challenge, alongside Pete Frates and others. ALS was a relatively unknown disease at the time, and the Ice Bucket Challenge not only increased awareness, but also raised $220 million worldwide for research, awareness, and local care.

“ALS is a disease that never stops attacking. It’s relentless, unforgiving, and discriminates against no man or woman. We need to make a change and we need to start now. The Ice Bucket Challenge was an amazing start, but we need to push further” – Pat Quinn

Since the Ice Bucket Challenge, Pat has continued working tirelessly as an ALS advocate, raising funds for research and spreading awareness through Quinn for the Win.

“I was put on this earth to make a difference in the course of such a horrific disease, and I also believe my tough Irish blood has something to do with that.”

Pat passed away on November 22, 2020 at the age of 37, but his legacy will live on in the hearts of the ALS community. Thank you, Pat, for your tireless work to advance research so that one day, we can create a world without ALS.

San Antonio Family Learns to Live with ALS

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By Guillermo Garcia

Guillermo and his family

My name is Guillermo Garcia. I am from San Antonio, Texas, and I was diagnosed with ALS in November 2015. It was ironic, because in August of 2014 we saw the Ice Bucket Challenge explode. Prior to that, we didn’t really have any knowledge of ALS and didn’t personally know anyone who had it. A group of us got involved in the challenge with my daughter’s softball team, and we started challenging everyone to do it. But we still didn’t really have a good idea of what it was.

In October of that year, my wife asked if I’d noticed that I had some twitching going on. I hadn’t until she pointed it out. We waited about a month to see if it would go away, but it didn’t. It just so happened that at the time, I was also having some issues with what we thought was carpal tunnel. I told my doctor about the twitching and was referred to a neurologist for some tests. I was diagnosed with ALS in November 2015, a year after initially noticing symptoms.

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After 13 Years, Regional Development Manager Bonnie Walsh is Still Inspired by Patients and Families

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Bonnie Walsh has served the ALS Association of Texas in different roles since March 2003. She currently serves as the Regional Development Manager for the Southwest Region of the state, managing two Walks to Defeat ALS and Battle ALS with Flowers, as well as other development activities. Read her story about her time with the Chapter and how it’s affected her life – both professionally and personally. 

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New Gene Discovered that Contributes to ALS

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$1 Million Grant from Ice Bucket Challenge Helped Spur Discovery

Today, researchers from Project MinE announced that they have identified a new gene NEK1 that ranks among the most common genes that contribute to ALS. The study revealed an association between mutations in the gene and ALS. The discovery of NEK1 gives scientists an exciting new target for drug development.

Approximately 10 percent of ALS cases are familial, meaning genes are inherited from a family member. The other 90 percent of ALS cases are sporadic, or without a family history. The NEK1 gene is present in approximately 3 percent of all ALS cases.

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Why We Need the ALS Ice Bucket Challenge

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Trece Porrata - Why We Need the ALS Ice Bucket ChallengeGuest post by Trece Porrata, a patient with ALS

My husband was challenged to do the Ice Bucket Challenge last year when we were visiting friends in Port Aransas with our kids. As he was filling the bucket with ice, he jokingly asked me, “Wait, what am I doing this for?” I replied, “ALS, silly!” realizing that I didn’t actually know what it was.

Quickly, I went into the house to do some research about ALS. I ended up on the ALS Association of Texas website, reading through ALS symptoms. As I went down the list — muscle weakness, fine motor control issues — I noticed that I had been experiencing some of those same symptoms lately. But I didn’t think much of it at the time — after all, ALS is a man’s disease, right? And we had an Ice Bucket Challenge to complete. I went back outside to tell my husband what ALS was, and moments later I was laughing at his reaction to the freezing water, handing them towels and forgetting all about my symptoms.

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ALS: Worth Fighting

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Ernie Worth, Patient with ALSGuest post by Ernie Worth, a patient with ALS

My name is Ernie Worth. I am a 38-year-old husband, a father of three, and an ALS patient.

For months leading up to my diagnosis last fall, I had been experiencing speech difficulties. For me, this was very strange, as I have always enjoyed giving presentations, public speaking, and the like. It started out subtly, and gradually got worse as time went by. I was also rapidly losing weight, and since I have always been very physically fit and health-conscious, the physical change was quite obvious and disturbing.

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