RGV Down Syndrome Association: Empowering and Educating for a Better World

(This article was written by Beth Marie Cantu Ensign and was featured in the October 2025 issue of Explore Harlingen Magazine.)

The Rio Grande Valley Down Syndrome Association (RGVDSA) provides connection, support, and advocacy for individuals with Down syndrome and their loved ones across the RGV. At the center of this effort is Deborah Tomai, the organization’s president and co-founder, whose personal journey as a mother led to the creation of a lifeline for families like hers.

Photo courtesy of RGVDSA

Deborah and her family had been living in the RGV for just two years when her youngest child, Ben, was born and diagnosed with Down syndrome.

Down syndrome is a genetic condition. People with Down syndrome may face health challenges or developmental differences, but with support and opportunity they can lead full, meaningful lives.

“I had a lot of questions about what the diagnosis would mean for Ben's life, what it would mean for our family, and I wanted to be a good mom. I wanted him to have a great life, and I just had a lot of questions about how that was going to work,” she recalled.

In her search for answers, Deborah was referred to a case manager to connect with other families in the area who had children with Down syndrome. “A couple of us all started calling each other… and it gave me a lot of hope.” That connection sparked the beginnings of the RGVDSA. 

Photo courtesy of RGVDSA

In March of 2021, Deborah and her new community of support decided to help spread awareness. One of the group’s earliest public events—the Step Up for Down Syndrome Walk—revealed how much the RGV needed such an organization. “We really were hoping we'd have a couple hundred people there… We ended up having over 1,000 people come, and we had 60 families who had kids or adult family members with Down syndrome sign up. It was amazing and beautiful,” Deborah said.

From its inception, RGVDSA has focused on building relationships, advocating for inclusion, and supporting individuals with Down syndrome and their families throughout the RGV. The organization works to show that people with Down syndrome are valued members of the community, with talents and contributions worth celebrating and recognizing.

The association offers a wide range of resources for families, starting from the moment of diagnosis. “We really want families to feel celebrated,” Deborah said, noting that the organization provides a congratulations basket to families, including information and resources in both English and Spanish. The organization also connects families through a private Facebook group, where members can share advice, celebrate milestones, and support one another.

Photo courtesy of RGVDSA

RGVDSA’s programs and activities continue to expand. In addition to the annual Step Up for Down Syndrome Walk, the group hosts classes, playdates, and even a theater program. “We have a group of adults with Down syndrome performing in a play inspired by Alice in Wonderland this year,” Deborah said.

Despite its success, the organization faces challenges. Being entirely volunteer-run makes it hard for families to stay consistently involved, and serving members spread across the RGV can be tricky. Looking ahead, Deborah has big plans. “In the next five years, we’d love to have staff and a space where families can gather for teen nights, tutoring, or new-mom meetups,” she said.

For now, the association continues to lean on the RGV community for support. Volunteers are always welcome, especially for major events, like the Step Up for Down Syndrome Walk, which will take place on October 18 at Edinburg Municipal Park. “You can reach out on our Facebook page… and we'll connect you for volunteering,” Deborah encouraged.

Through this network, families find guidance, friendship, and a place to celebrate milestones together. The Rio Grande Valley Down Syndrome Association is proof of the power of parents uniting to create something larger than themselves, serving not just their families but the community.

For families looking to connect or get involved, RGVDSA is always welcoming new members and volunteers. You can reach out through the Rio Grande Valley Down Syndrome Association page on Facebook or visit their website (rgvdsa.org) to learn more.