Augie In Action! Augie In Action! - Ihrsa

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