Designer Genes is an organization that was launched in 1986 by a small group of families who had children with Down syndrome. When launching, their main objective was to create a community and support one another. Today, that message and inspiration has grown immensely, with an estimated 260 families across North Dakota involved.
I spoke with Roxane Romanick, Executive Director of Designer Genes of North Dakota, Inc., to discuss the nonprofit’s journey since the beginning, what sets Designer Genes apart from other organizations, how they’re impacting the Bis-Man community, and more.
Designer Genes has found success since its creation in 1986, yet the team behind the organization decided to expand further just over a decade ago to push the boundaries of its message and impact on North Dakota. Since 1986, Designer Genes has broadened its work to include advocacy and education for North Dakota providers, medical outreach for new diagnoses, and collaborative efforts in delivering services across the state.
“We aim to carve out a niche to be experts on the topic, as there are no other Down syndrome associations in North Dakota.”-Roxane Romanick
Designer Genes’ leaders created a board in 2009 and incorporated Designer Genes in 2011 with the intention of advancing the original vision of support for every family in North Dakota. With the creation of this board came the position of Executive Director, which is currently held by Roxane Romanick. According to Romanick, since Down syndrome is typically diagnosed before or at birth, the organization aims to be there for families from the beginning.”
As the Executive Director of Designer Genes of North Dakota, Inc., Romanick has extensive experience in developmental disabilities and special education, as well as a Master’s Degree in Social Work. Furthermore, she has a 23-year-old daughter with Down syndrome and looks for endless ways to support families on a wide variety of topics, spanning from prenatal through the lifespan.
“When looking to expand, we envisioned a paid staff that could provide support and connect families through activities, social media, and other ways. We also felt like we could influence public policy and improve the capacity of North Dakota’s providers who are in a position to support both individuals with Down syndrome and their families,” Romanick said.
Since the expansion and incorporation that took place just over a decade ago, Designer Genes’ journey has been “steady as it goes,” according to Romanick. Designer Genes has seen consistent growth in its impact, reputation, work with families, and ability to fund the organization. This is due, in part, to “consistent leadership since 2009 and a strong, committed board of directors and sponsor base.”
Designer Genes’ Circles of Support
Three circles of support shape the work of the organization: Learning, Earning, and Belonging. These circles represent the triplicate copy of the 21st chromosome, as well as wholeness, completeness, and protection. Designer Genes embraces people as they are, aiming to create supportive and protective communities.
Designer Genes believes learning is a powerful tool and works to empower and educate professionals, parents, and the community.
Designer Genes strives to find earning opportunities for members and the organization through education, employment, independence, and support.
Designer Genes believes everyone has the right to belong and works to create connections, opportunities, and outcomes.
Over the years, the team behind Designer Genes has also been able to overcome plenty of obstacles to find growth, such as during the COVID-19 pandemic. They did this by converting all activities into a virtual setting. Their goal, within this journey, is to ensure that families of all types have a “North Star” to look toward regarding all things Down syndrome, according to Romanick.
As they aim to be the hub for all Down syndrome resources and knowledge across the state, they don’t wish to do it alone as there’s strength in numbers. Designer Genes is continually interested in collaborative partnerships, as they often work together with other organizations in conferences, trainings, and more. No matter who they associate themselves with for various partnerships and events, they remain committed to the original goal at hand.
“Our mission is to improve the ability of individuals with Down syndrome and their families to earn, learn, and belong. We do this by supporting families and their individuals in the best way possible. We also offer families in BismarckMandan an opportunity to connect through family activities,” Romanick said.
“Our Walk for Down Syndrome is held annually each September and brings families from across the state to participate. We are also closely involved with planning and supporting various educational opportunities for families and professionals, such as a three-part webinar series [we did] last fall on Understanding Individual Education Plans.”
Aside from supporting their annual walk and other events, readers interested in contributing to the cause can also donate monetarily. Furthermore, they can rest assured that their money will go to support the aforementioned work and efforts being made across the state.
“The only money that leaves our organization is an annual donation made to a national initiative of the board’s choosing. Over the last couple of years, Designer Genes has been supporting the development of health guidelines for adults with Down syndrome that are being developed by the Global Down Syndrome Foundation in Colorado. This work has already benefited North Dakota residents,” Romanick said.
For those interested in contributing to the cause non-monetarily, Designer Genes is continuously in need of supplies for their baby support packages. They also have various volunteer opportunities throughout the year, including the annual Walk for Down Syndrome, which remains their largest event. They also run the iCan Bike Camp, which will take place from July 31 to August 4 this year, and will require roughly 40 volunteers throughout the week.
Aside from financial donations and volunteering, Romanick is also appreciative of people simply doing their part within the community to push the cause further and spread awareness.
Designer Genes’ Annual Walk for Down Syndrome
The event is held annually on the third Saturday of September with over 70 community teams in attendance.
Gross Revenue: $94,000
Attendance Estimate: ~1,500
“Continue to consider the public policies needed to keep individuals living in their homes and communities. People can also like our Facebook page and share our messages from there. We want folks to think about what they can do at the places they frequent, such as work, school, church, and other places to make those locations more inclusive and accessible for someone with a cognitive disability,” Romanick said. Contact Designer Genes to learn more about how you can help support this wonderful cause and make a difference in your community.
Designer Gene’s Impressive Impact According to Roxane Romanick
- We estimate that roughly 600 individuals with Down syndrome live in North Dakota-it’s our hope to include all of them on our mailing list. As you can see we’re close to hall.
- We don’t just support kids. We are available to all individuals and their families, whether 1 day or 65 years old. And P.S.-Adults with DS are not children!
- Advocacy on public policy is incredibly important for us to be involved in because many of our individuals depend on public support to live quality lives in their communities.
- Down syndrome is diagnosed through a blood test and genetic panel, most often during pregnancy and/or just after birth. We have support packages in the majority of North Dakota’s birthing hospitals to greet and celebrate these new babies.
- We are run by families for families. Family-to-family support and applying family wisdom to help each other is an inherent belief and practice.
- It’s important that we are in touch with the most up-to-date, accurate, and effective information.
- We are separate from a national organization and the decisions about our funds are made by our local board.
- We have a paid staff on board because we value having a dedicated person available to provide direct member support, advocate for public policy, and continue to educate about the positive potential of individuals with Down syndrome.
Designer Genes’ Reach
Designer Genes has:
- Impacted 260 people with Down syndrome
- Gained 1,500 Facebook followers
- Touched 82 North Dakota communities