Tulane alumni empowering the Down syndrome community in greater New Orleans

By Mary-Elizabeth Lough, PhD

 

They are committed moms. They are proud alumnae. And they are determined to make a difference — raising awareness, building resources and changing the conversation around Down syndrome, not just for New Orleans, but for the world.

“I never met anyone with Down syndrome until I had my daughter, and that seems kind of crazy to me, because it's the most common genetic condition,” recalls Sandy Juarez (G *95).

When her daughter, Ella, was born in 2009, Juarez found that many people responded negatively, zeroing in on limitations and complications. A neighbor who had worked at a camp for children with special needs provided a refreshing breath of positivity and hope, leaving Juarez struck by how impactful such a perspective could be for families.

A self-professed “research nerd,” with a master’s in international relations and PhD course work from Tulane, Juarez applied her ample research and critical thinking skills to learning more about Ella’s condition. When she did, she swiftly learned about GiGi’s Playhouse Down Syndrome Achievement Centers that were available in other parts of the country. With GiGi’s orientation toward acceptance and achievement and its commitment to offering free therapeutic, educational and career training programs for individuals with Down syndrome from birth through adulthood, Juarez was determined to bring a GiGi’s Playhouse to New Orleans. She was so determined, in fact, she took on the role as board president of GiGi’s Playhouse New Orleans, in addition to her full-time career with the Federal Reserve Bank of Atlanta.

Current GiGi’s Playhouse New Orleans Vice President Lory Lewis (B ’06, B *06) first heard about GiGi’s in 2019, as the organization was moving from the start-up funding phase to the pre-opening phase. Her son had been diagnosed with Down syndrome the previous year, and she, too, appreciated the positive orientation of GiGi’s.

“We get to leverage the Tulane students’ enthusiasm and energy. And then they, in turn, get an opportunity to interface with a population they might not have otherwise been involved with.” Founding Board President GiGi’s Playhouse New Orleans Sandy Juarez (G *95)

“That summer the start-up fundraising team was looking for volunteers to form a board to move into the next phase, and a specific need was for a treasurer. I thought, ‘Well, I'm a CPA. I could be a treasurer. So, I joined the board, and have been volunteering in various capacities ever since,” recalls Lewis, who received her BSM in finance and Master of Accounting from Tulane.

“The reason I wanted to get involved with GiGi's Playhouse and help bring it to New Orleans is that its mission really resonated with me: ‘To change the way the world views Down syndrome and send a message of acceptance for all,’” she adds.

When GiGi’s Playhouse New Orleans Down Syndrome Achievement Center officially opened in October 2020, Lewis quickly recognized its unique potential as a service-learning destination for Tulane students. The connection between Tulane and GiGi’s began with a few interns helping Lewis perform research for grants. In fall 2021, GiGi’s was paired with a service-learning class, and the connection between the two institutions has continued to grow and thrive.

Since 2020, Tulane students have found countless ways to share the strengths of their education with the GiGi’s community. Newcomb-Tulane College students have served as tutors in 1-on-1 literacy and math tutoring programs, Freeman students offered a marketing consulting class project, School of Medicine students have fulfilled their service-learning requirements as they work toward their MD degrees, and this past December a Tulane student volunteer with Tulane Emergency Medical Services (TEMS) brought a university ambulance for an open house where GiGi’s participants could explore the vehicle. 

“It's a win-win because we get to leverage the Tulane students’ enthusiasm and energy,” says Juarez. “And then they, in turn, get an opportunity to interface with a population they might not have otherwise been involved with.

“Whatever course of study [Tulane] students have, we expect them to go out into the world, and be leaders and be in positions where they can make decisions that can either hurt or benefit marginalized communities, such as individuals with Down syndrome and other disabilities. … Tulane is a renowned institution with an international draw, and I think that works in favor of our mission to spread the message of global acceptance,” she adds.

“The reason I wanted to get involved with GiGi's Playhouse and help bring it to New Orleans is that its mission really resonated with me: ‘To change the way the world views Down syndrome and send a message of acceptance for all.’” — Lory Cenac Lewis (B ’06, B *06), GiGi’s Playhouse New Orleans vice president

That message of acceptance resonated with Torrie Farley (SCS *15, SoPA ’24). Though she grew up in nearby Chalmette, Louisiana, Farley had never considered a Tulane education before becoming an employee. She began in dining services before making her way to the Office of Advancement where she rose to become a program manager, working toward her master’s degree along the way.

When her daughter Maddie was born in March 2021, her Down syndrome diagnosis was a surprise to the family. Ten months later, Maddie developed significant complications and cardiologists informed the family that she had two holes in her heart, an atrial septal defect and a ventricular septal defect.

Farley spent months caring for Maddie at Children’s Hospital New Orleans LCMC Health while continuing to work for Tulane remotely. She was cheered by the way in which the Tulane community rallied around her with coworkers from across Advancement and members of the Tulane Fund Advisory Board offering support and, often, gift cards for UberEats and Starbucks as she spent her days tending to Maddie.

As Maddie healed, Farley’s determination grew. She was thrilled with the lifestyle resources GiGi’s Playhouse offered and wanted to help augment medical resources for the Down syndrome community.

Farley volunteers with the Down Syndrome Diagnosis Network and also pulled a team together to enter the annual “buddy walk” the Down Syndrome Association of Greater New Orleans (DSAGNO) holds to raise awareness.

“While I was at the event I met the current president. I said ‘I'd really love to get involved. You know, I work at Tulane in the fundraising department, I plan events for our team, and I'd love to help. So, eventually, I joined the board. And then the next year I ended up becoming president.”

Farley took her experience working on Give Green, Tulane’s annual giving event, to start a giving day at DSAGNO to raise awareness and support. “It's March 21 every year because the 3/21 stands for the three copies of the 21st chromosome.

“I feel like it’s a day that our organization doesn't celebrate. Why don’t we try to treat it like an annual giving day? We do it at Tulane, and people love it. It’s a little different, but the goal here is to raise awareness.”

As Farley works with DSAGNO to raise awareness, they are finding themselves in a familiar locale — holding meetings in the supportive environment of GiGi’s Playhouse New Orleans Down Syndrome Achievement Center.

Juarez, Lewis and Farley have each brought the unique strengths fostered by their Tulane experience to their advocacy. Drawing upon Tulane’s collaborative spirit and commitment to community engagement, they are fostering understanding, developing resources and paving the way for a more inclusive and supportive future in New Orleans and beyond.