Champions

https://www.als.net/news/lynne-nieto-elected-chair-of-als-tdi-board-of-directors/?fbclid=IwAR25eYCEhvrwphePtW1tvVEX1vVYEDslBc7uXbu-UqsttF_zWxFBYO1zCvE

https://www.cmc.edu/news/memoriam-fitness-innovator-and-als-hero-augie-nieto-80-p08

Augie Nieto was our hero. 
 
He inspired us, made us laugh, and made us cry. He taught us that when life hands you unspeakable challenges, what really matters is surrounding yourself with people who love you, and a cause you believe in. He was passionate about finding a cure for ALS, and we are proud to be “Augie’s team”.
 
Augie passed peacefully yesterday surrounded by his beloved wife, Lynne, his family and loved ones.
 
Augie wrote:
 
Please keep me in your hearts…please help continue the progress of Augie’s Quest to Cure ALS. Please help Lynne to carry on the mission – the second finest achievement of my life. Because I will be in your heart, I will get to experience the joy when we discover a cure.
 
Augie was a visionary – an icon in the fitness industry, and a powerful force in the ALS space. He was the Co-Founder and retired CEO of Life Fitness, Chairman and Co-Founder of Augie’s Quest to Cure ALS, and the Chairman of the ALS Therapy Development Institute. He was a beloved husband, father, brother, son, mentor, and friend. Under his leadership, almost $200 million was raised for ALS research. More importantly, Augie was directly responsible for countless advancements and changing the landscape of this horrific disease that ultimately took him just after his 65th birthday.
 
We were proud to fight with Augie and Lynne to transform the way ALS research is funded, approaching it in unprecedented ways. We will diligently work beside his beloved wife in Augie’s honor and memory to find a cure for ALS.
 
Augie wrote:
 
I know that my fight is not over. I have battled ALS for almost 18 years. Physically, ALS has finally taken my body, but my battle to rid the world of this insidious disease will continue.
 
We love you Augie. We’re with you, Lynne.
 
Your Augie’s Quest Team
 
Shannon, Gretchen, Kelly, Angel and Kelsey

August 26, 2022: Augie’s Quest to Cure ALS granted $159,122 to the ALS Therapy Development Institute today. Special thanks to Scott Cameron, recipient of the Phil Green award and chairman of the Cure ALS Golf Classic, for playing a key role in raising these research funds, which are granted in his honor. Scott is a member of the Augie’s Quest to Cure ALS Leadership Council and works tirelessly to find treatments and a cure in honor of his late father, Sandy, who had ALS.

“Thank you to Scott Cameron for sharing our Quest to find a cure for ALS, and his continued leadership,” said Augie Nieto, Chairman of Augie’s Quest to Cure ALS.  “With warriors like Scott and his family, we’re closer than ever to a cure.  We’re proud to provide these funds to ALS TDI in honor of the great volunteer work being done by Scott Cameron ,Phil Green and the dedicated event committee.”

These critical funds support the Augie’s Quest Translational Research Center at ALS TDI which was established to better understand the mechanisms of how amyotrophic lateral sclerosis (ALS) affects the body and use the knowledge to develop new, more effective treatments for the disease. These funds are part of a larger $5.8 million grant from Augie’s Quest to ALS TDI through 2024 that was established to fund the discovery of new candidate drugs to slow, stop, or even reverse ALS disease progression.

The Cure ALS Golf Classic has raised more than $1 million for ALS research. 

FOR IMMEDIATE RELEASE

Sept. 15, 2020

ALS Community Comes Together in Unprecedented Fashion To Urge Congress To Pass Critical Access To Disability Benefits Bill

Twenty ALS Advocate Groups Coordinate to Attain More than 360 Co-Sponsors

in both the House and Senate

WASHINGTON – This week, twenty ALS advocacy groups collaborated together to thank the more than 360 Congressional members from across the aisle who have co-sponsored H.R. 1407 and S. 578, which would extend Social Security Disability Insurance (SSDI) benefits for patients living with ALS. The ALS community is now calling on Congress for swift passage of H.R. 1407 and S. 578.

The legislation was introduced 19 months ago, but the coordinated campaign among local, regional and national ALS organizations drove progress in the past six months to attain Congressional support. The passing of the bill will provide ALS patients and their loved ones access to SSDI benefits without having to wait five months from the time of diagnosis – an eternity within the two-to-five-year life expectancy of the disease.

The effort was sustained by members of the ALS community who worked with Congress, including:

• ALS Hope Foundation
• ALS ONE
• Answer ALS
• Augie’s Quest to Cure ALS
• Brigance Brigade
• Compassionate Care ALS
• Every90Minutes Foundation
• Everything ALS
• Hope Loves Company
• I AM ALS
• Joe Martin ALS Foundation
• Les Turner ALS Foundation
• A Life Story Foundation
• Live Like Lou
• Muscular Dystrophy Association
• The Northeast ALS Consortium (NEALS)
• The Project ALS Therapeutics Core at Columbia
• Team Stevens Nation
• Team Gleason
• Your ALS Guide

The ALS community is grateful to each Representative and Senator supporting H.R. 1407 and S.578 during this critical moment for our nation. ALS is an enormous financial burden and it is crucial those living with ALS and their families have as much support as possible. Now, more than ever, it’s imperative Congress passes H.R. 1407 and S. 578 and sends it to the President’s desk for his signature.

About ALS

ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies: unable to eat, talk, breathe or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. ALS will affect 1 in 300 people in our lifetimes, and patients usually have no more than two to five years to live following diagnosis.