2024 Summer Issue of Urban Land - 27

I got involved in the [nonprofit] development side of ULI
because I realized [that] if an organization can't raise
money, it can't accomplish its mission. "
-GEOFFREY STACK, FOUNDING PARTNER, SARES REGIS GROUP
serving as the chair of the Annual
Fund before he eventually became
the Foundation chair in 2014. " I got
involved in the [nonprofit] development
side of ULI because I realized
[that] if an organization can't raise
money, it can't accomplish its mission, "
he says. " For me, it's been
a transformative experience. I've
learned so much and gained so
much from it. "
At the core of Stack's commitment
is a profound belief in ULI's mission.
" When you look at the challenges
that we face in the environment
today, many of which have been
exacerbated by poor land planning
and development, it's an opportunity
to improve the world. Applying
the best practices for land use will
greatly benefit the environment and
our communities in the long run. "
Abbey concurs, saying, " Land use
policies and practices are critical to
solving the issues facing the world.
And what organization is better
positioned than the Urban Land
Institute, with its more than 48,000
members and its District Council
network, to come up with the best
ideas for achieving decarbonization,
building more affordable housing,
and improving land use policies and
practices? "
A key role in cystinosis research
The Stacks' philanthropic journey
extends far beyond their involvement
with ULI. In 2003, the couple
founded the Cystinosis Research
Foundation. " Our interest in health
care and finding cures for diseases
stems from the fact that our own
daughter, Natalie, was born with
a very rare genetic disease called
cystinosis, " says Nancy Stack, the
foundation's president. " It's a metabolic
disease that affects every cell
in the body, and it's a progressive,
debilitating disease. The average life
expectancy is the late 20s. To even
get to that point, people must take
a cocktail of medications around the
clock. There are no days off from
cystinosis. "
Right before her 12th birthday,
Natalie made a wish " to have [her]
disease go away forever, " Nancy
Stack recalls. " That wish changed
our lives. I said to Jeff, we need to
do something. " Within weeks, they
had raised more than $100,000 at
a cocktail party of friends and community
members, and by the end of
that year, they had amassed more
than $350,000 for research. Since
its inception, the Cystinosis Research
Foundation has raised $72 million.
" Our pledge has been to underwrite
all the expenses and operations of
the foundation, so that 100 percent
of what people donate goes directly
to research, " she adds.
One goal was to find a better
treatment for cystinosis, because at
that time, the treatment " involved
taking the medication every six
hours, 24/7, " Nancy Stack says. " We
focused on developing a delayedrelease
version of the medication
and supported all the early research
and clinical trials to develop that ....
The medication was approved by the
FDA [U.S. Food and Drug Administration]
in 2013. So, we now have an
option to take a drug every 12 hours
instead of every six hours, which is
significantly better. "
The Cystinosis Research Foundation's
ambitions didn't stop there,
though. " Our other mission was to
find a cure for cystinosis, " Nancy
Stack says. " We started funding stem
cell research in 2007 with our first
grant to Dr. Stéphanie Cherqui, from
UC San Diego, who promised us that
she would work her entire career
[to] find a cure for cystinosis. "
That commitment paid off in 2018,
when Dr. Cherqui received FDA
approval for the first stem cell gene
therapy clinical trial for cystinosis. To
date, six patients have undergone
the therapy, including Natalie Stack
herself. " It came full circle for us-our
daughter has a chance at a longer
life, " Nancy Stack says.
Jeff Stack's longstanding involvement
in ULI also played a role in the
Cystinosis Research Foundation's
successes. " We've been able to raise
tens of millions of dollars for cystinosis
research, and a lot of that money
has come from the real estate sector,
from friends and business partners
and associates of [Jeff's], " Nancy
Stack says.
The Stacks' philanthropic efforts
are having a ripple effect far beyond
this one disease. " Because cystinosis
is so complicated, and because
every tissue is affected, when you
start discovering things about cystinosis,
you can apply them to other
diseases and disorders, " Nancy Stack
says. " Not only does Dr. Cherqui
have plans to cure Friedreich's ataxia
and Danon disease, but she also
published a paper last year about
her work on a treatment to reverse
some of the effects of Alzheimer's
disease. So our donors, unbeknownst
to them, were funding so much more
than cystinosis research. Now, our
work will hopefully help millions of
people, with other diseases, around
the world. "
Novartis has since acquired the
stem cell gene therapy program for
the treatment of cystinosis and is
running the next phase. Meanwhile,
SUMMER 202 4
URBAN LAND
27
ULI FOUNDATION
2024 Summer Issue of Urban Land

Table of Contents for the Digital Edition of 2024 Summer Issue of Urban Land
