When Nicole Terry first received the news of a prenatal Down Syndrome diagnosis during her pregnancy six years ago, she and her husband found themselves navigating a complex spectrum of emotions. While they each processed the news differently, Terry said she grappled with the weight of "mom guilt" as she prepared for the arrival of their second child. 

When a representative from Down Syndrome Connection of Northwest Arkansas (DSCNWA) reached out to the couple, Terry said it changed everything. Connecting with others who had navigated the same path gave her a perspective she hadn't found elsewhere.

“I met with the mom group a couple days before I delivered Presley, and felt on cloud nine,” said Terry, who now serves as the nonprofit’s chief operating officer. “Meeting this group and having the support from parents helped me to overcome so many emotions. I don't know what I would have done without this group.”

While the organization began as an informal support network, it quickly evolved into a formal nonprofit and is celebrating its 20th anniversary this month.

Whether it’s expecting parents or an adult with the condition moving into the region, DSCNWA offers a support system for families and individuals throughout their journey. The organization is dedicated to ensuring that families have a community to lean on, not only to navigate challenges, but also to celebrate milestones, Terry said.

“We're a small organization with a huge community behind us — families, volunteers, therapists and partners across Northwest Arkansas,” she said. “We believe that people with Down syndrome deserve opportunities to thrive, and we're here to support every step.”

A free DSCNWA membership provides access to its services, including new parent support groups, family events, age-specific social and life skills programs, workshops and camps, and connection to additional resources.

The nonprofit works with health care professionals in the region, partnering with Arkansas Children's Hospital, Mercy, Willow Creek Women's Hospital and The Perinatal Center to help ensure parents have a support system that will continue beyond birth in addition to their medical care team. 

“When their doors close, our doors open,” Terry said. “We're here to support them, but also to make sure that they're in a setting with somebody that they can lean on, because they're going to process a lot.”

DSCNWA’s Text Tribe also gives parents the opportunity to connect with a handful of other members over text messaging. It’s a space for members to ask questions, share wins, or find care and support with other parents of a child with Down syndrome.

This year, DSCNWA expanded its footprint within the Center for Nonprofits in Rogers, transforming an additional suite into a community hub. Located at 1200 W. Walnut St., the new space offers a dedicated environment where members can gather, use the facility’s craft materials, or have play dates in a safe and secure environment. A large TV was added so members can stream classes, such as yoga or art, together.

The community room will also host the organization’s new “Mommy and Me” program. In partnership with the occupational therapy program at the University of Arkansas for Medical Sciences, this six-week course guides families through vital developmental areas, including gross and fine motor skills, oral-motor function, and sensory exploration.

“It's a way to not only help mothers bond with their children, but also give them the tools that they need to help them in that developmental journey with their child with different tips and tricks they can use at home,” Terry said.

Along with its 20th anniversary, DSCNWA is hosting its second-annual 5X5 Art for a Cause fundraiser on April 23 at Thaden School Great Hall. The gallery-style event will feature more than 100 original artworks by local artists and DSCNWA members up for bid, along with live music and food.

The community can support DSCNWA’s mission with donations, corporate sponsorships or volunteering.