Augie In Action! Augie In Action! - Ihrsa
Augie In Action! Augie In Action! - Ihrsa
Augie In Action! Augie In Action! - Ihrsa
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Conquest of a Killer<br />
Nieto, IHRSA President/CEO Joe Moore<br />
MDA telethon clout<br />
66 Club Business <strong>In</strong>ternational | MARCH 2008 | www.ihrsa.org<br />
Today, he attests, companies invest enormous energy, resources, and<br />
imagination in their charitable arms. And they don’t just throw money at<br />
problems, but, rather, contribute their time and talents as well. “Their<br />
goal,” he says, “is to fill those gaps where government and society have<br />
faltered, where, otherwise, human suffering might go unrelieved and cures<br />
might never be found.”<br />
Shannon Shryne, a veteran fund-raiser and the national director of<br />
business development for the MDA, is painfully familiar with such gaps.<br />
Because ALS affects a relatively small number of Americans—approximately<br />
5,600 victims are diagnosed each year—it’s considered an orphan<br />
disease, and, as a result, doesn’t attract meaningful attention from<br />
profit-oriented pharmaceutical companies.<br />
Shryne now spends 90% of her time on AQ and has observed,<br />
firsthand, the impact that it’s had on the MDA. “The MDA deals<br />
with 43 different neuromuscular diseases, one of which is ALS,”<br />
she tells CBI. “We’ve always been determined to find a cure for<br />
ALS, but <strong>Augie</strong>, with his business acumen and strong fundraising<br />
instincts, has allowed us to intensify that focus, and begin<br />
making some important progress toward finding a cure.”<br />
Shryne describes <strong>Augie</strong> and his wife, Lynne, who, together,<br />
co-chair the association’s ALS division, as the “two most important<br />
people ever” in terms of having an impact on the search for a<br />
cure for ALS.<br />
Systematic search for a cure<br />
The MDA has a total research budget of approximately $40 million<br />
a year, with $10-$12 million of that amount earmarked for<br />
ALS projects. <strong>Augie</strong>, with his three-year $18-million goal, would<br />
effectively increase ALS research funding by 50%. The infusion<br />
promises to expand, in a significant way, what the MDA can<br />
do, notes Sharon Hesterlee, the organization’s vice president of<br />
translational research. “It’s given us the ability to try some edgier,<br />
out-of-the box projects, without risking the basic $10 million a year<br />
that we’ve already committed to academic research,” she says.<br />
One such project involves another partnership, this one between<br />
AQ and the ALS Therapy Development <strong>In</strong>stitute (ALS TDI), a nonprofit<br />
biotechnology and drug therapy discovery firm based in<br />
Cambridge, Massachusetts. Working with the MDA’s clinics, ALS<br />
TDI collected DNA samples from ALS patients, began searching<br />
for genes that might play a role in the disease, and, initially, found<br />
50 that seemed to be involved; it subsequently narrowed the field<br />
to 14 genetic “targets of interest.” The company announced its<br />
groundbreaking findings at a major medical conference in 2006.<br />
The hope is that the studies, which are still being analyzed, will improve<br />
the understanding of the biochemical pathways used by ALS and, possibly,<br />
point in the direction of possible therapies or, even, a cure.<br />
AQ paid for half of the project’s $1.3-million cost.<br />
“Thanks to the business advice provided by <strong>Augie</strong>, and to the fund-raising<br />
work on the part of the AQ team, we’ve been able to attack this disease<br />
with the same weapons utilized by the pharmaceutical companies,” explains<br />
Hesterlee. “It’s a very systematic approach that looks at every single<br />
gene change. If you turn over enough rocks, you’ll eventually find what you’re<br />
looking for. Now, it’s just a matter of when—not if.”