Augie's Quest funds research that reveals first-ever clues to cause of Lou Gehrig's disease: Is a cure next?

Funded by a $625,000 grant from Augie’s Quest, researchers have revealed specific genetic abnormalities that seem to play a role in the sudden and until now unexplained onset of amyotrophic lateral sclerosis (ALS), known as Lou Gehrig’s disease.

The announcement came Nov. 30, 2006, at an international ALS conference in Japan, and was made jointly by the Muscular Dystrophy Association (MDA) and the Translational Genomics Research Institute (TGen). Fitness industry pioneer Augie Nieto, who was diagnosed with ALS in March 2005, is co-chairman of the MDA’s Augie’s Quest drive to raise funds to find a cure for ALS — a drive that has been broadly supported by the fitness industry.

“We have found pathways that have never before been associated with ALS, and now they are,” Nieto told SNEWS®. “Eighteen months ago, they were not allowed to use the word ‘cure,’ and now they can.”

Nieto, who started Augie’s Quest (www.augiesquest.org) and is co-chair with his wife, Lynne, is co-founder and former president of Life Fitness, chairman of Octane Fitness and is an advisor for North Castle Partners, a private equity firm focused on healthy living trends. ALS is a progressive neurological disorder that usually leads to paralysis and death in three to five years. It has baffled researchers for nearly 140 years.

TGen researchers said the differences they have identified implicate genes that are likely to play a role in cell function that control nerve adhesion, offering a major new avenue for ALS research. TGen researchers identified the differences by screening DNA samples from over 1,200 people with ALS and 2,000 people without sporadic ALS using state-of-the-art microarray technology by Affymetrix of Santa Clara, Calif.

“Our findings indicate these genes produce a sort of molecular glue that attaches motor neurons to muscle. It appears that in ALS, the nerve is able to peel off the muscle and, when that happens repeatedly, the nerves die,” said Dietrich Stephan, TGen director of Neurogenomics and the study’s principal investigator, in an official statement.

What is extraordinary about this study is how quickly this breakthrough occurred, the MDA explained in a release. A new fast-track research funding approach used by MDA and the new microarray technology by Affymetrix that lets researchers quickly scan people’s genomes enabled the experiment to be completed in just nine months.

“There is a revolution going on in research, and this study is a perfect example of how things are changing,” said Sharon Hesterlee, MDA vice president of translational research. “New technology is letting us look at the genome at a level of detail that was unthinkable just a few years ago and, as a result, costs are coming down, results are coming much faster and we’re seeing breakthroughs in diseases that have baffled researchers for decades.”

Nieto noted another significant point with this study was how business can help science.

“When an entrepreneur can help facilitate science, we can move at a whole different speed,” Nieto said. “We signed our agreement with TGen, the genetics laboratory, in February. We collected 1,200 samples over the next two months and processed all of the data by late August. That represents about a 75 percent increase in the time for similar experiments.”

According to MDA and TGen, the next steps center around “high-throughput screening” for drugs that act on the biochemical pathways identified by the DNA screen. 

Click here to read a Nov. 30 Wall Street Journal article, “A Fitness Mogul, Stricken by Illness, Hunts for Genes.”

Bash 2007: ready, set…
Looking ahead now to the second-annual “bash” to raise money for Augie’s Quest, Nieto told SNEWS®, “I’m having a ball in my second career.”

This year called the “Black & Blue Bash for Augies’ Quest,” the fund-raiser will again be held during the IHRSA show and will take place March 30, 2007, at the San Francisco Marriott. Sponsors so far include 24 Hour Fitness, Equinox, LA Fitness, North Castle Partners, Western Athletic Clubs and IHRSA, with more sponsorship opportunities available at many levels. For more information about sponsorships, contact gbohrer@mdausa.org or call 714-550-0161. Ads for the Bash’s journal and individual tickets will go on sale Jan. 3. Go to www.augiesquest.com to read more about the coming event, see pictures of last year’s Bash, and read about fund-raising efforts and other news.

At the first event at the 2006 IHRSA show (click here to read a March 23, 2006 SNEWS® story, “Augie’s Quest for ALS cure raises $2.8 million and awareness,” the industry jointly raised $2,813,649.

“The fitness industry should be proud of its help,” Nieto said, “in searching for a cure.”