A year ago at a REX Roundtable event, an idea was hatched between Kevin McHugh, COO of The Atlantic Club, Manasquan, New Jersey, and Jim Worthington, owner of Newtown Athletic Club, Newtown, Pennsylvania. The idea was to have staff at health clubs raise money for research to cure amyotrophic lateral sclerosis (ALS) by getting donations to run a half marathon in an initiative called TeamQuest4ALS.
On Saturday, staff and members at 10 clubs and four vendors did just that by running in the Brooklyn Rock 'N' Roll Half Marathon in the New York City borough of Brooklyn. In fact, the group, which had a goal of $375,000, raised $411,000 (as of Sunday) for the ALS Therapy Development Institute (ALS TDI), according to the group's donation page. ALS TDI is a non-profit research group headed by Augie Nieto, who co-founded Life Fitness. Augie is chairman of the board of directors for ALS TDI and co-founder of Augie's Quest, a fundraising group. He was diagnosed with ALS 11 years ago.
Augie's wife, Lynne Nieto, who co-founded Augie's Quest with Augie, attended the event to lend her support. Augie's son, Austin Nieto, ran in the half marathon. Even though the half marathon is over, anyone can still donate through the end of the month.
Because of the success of the TeamQuest4ALS initiative, the initiative will expand in 2017 to more half marathons—and more participating health clubs, McHugh said at a pasta dinner Friday night at the New York Marriott Brooklyn Bridge where the runners stayed the night before the race. Worthington told Club Industry that his club already has committed to running in the Philadelphia Rock 'N' Roll Half Marathon in September 2017.
McHugh said that if this small group could raise this much money—the Augie's Bash fundraiser at the IHRSA conference in March 2016 raised $1.4 million by comparison—then think what more clubs participating could raise.
Since 2006, Augie's Quest, which is the fundraising arm of ALS TDI, has raised more than $45 million for ALS research, according to its website.
In August, Shannon Shryne, vice president, strategic partnership, ALS TDI/Augie's Quest, shared in an email to supporters of ALS TDI that due to the money raised up to that point, ALS TDI is now able to manufacture the anti CD40L drug that the organization's lab developed at the quality and quantity necessary to move forward for clinical trials. The next step is a non-human primate trial to determine dosing and toxicity, which will cost $250,000 for the dosing study and $1.25 million for the toxicity study. Once these studies are finalized, the group starts the process of approaching the FDA for human clinical trials.
"No other non-profit has brought a drug to this point … This is the only drug that has gotten to this stage with zero for-profit support," Shryne shared in the email and reiterated at the event this past weekend.
The group needs an additional $6 million to $8 million to get to human trials.
"After the toxicity studies and dosing trials are done in monkeys, it's more likely a for-profit pharmaceutical company would be interested in this drug as it's showing great potential," she wrote. "So...in addition to working to raise these critical funds the way we normally go to business, we're also shopping the data to pharma for a potential partner."
Once the money is raised, it would take a year to get the human trials started.
"If we had this money in the bank today, we'd look at human trials happening in Q4 of 2017, or Q1 of 2018," she wrote.