For centuries, and even as recently as 35 years ago, individuals with Down syndrome were institutionalized. “Parents could be looked down on for not institutionalizing their children and for wanting to mainstream them,” said Nicole Volz, director of development at the nonprofit organization Down Syndrome of Louisville.

Founded in 1977 by Mary Carter, Down Syndrome of Louisville, or DSL, has become one of the most respected Down syndrome organizations nationally and internationally. DSL offers 47 services and programs—focusing on education, advocacy and support—throughout 18 counties in Kentucky and Southern Indiana, and 100% of the funds they raise stay in the Kentuckiana area. There are over 1,200 individuals living in the area with Down syndrome.

“Individuals with Down syndrome should not be underestimated,” Volz said. “Our members work and live in the community, give to the community, and have a place and purpose in the community. They have hopes, wishes, dreams and goals just like everyone.”

Down Syndrome of Louisville offers the only known “Lifelong Learning” program in the world for individuals with Down syndrome, serving them as early as six months old and continuing throughout their lifespan.

“As a sister to someone who has Down syndrome I am confident in saying that without Down Syndrome of Louisville my family would have been lost,” Volz said. “When you have a child born differently abled, the traditional people you lean to for help and guidance don't have the knowledge base to give you the help or guidance you need, and that can be very scary.”

Before she joined the staff of DSL two years ago, Volz had a career in investment real estate. She also has a lifelong interest in fashion, and in 2017 she created Down with Fashion Show, a fundraising event held at Churchill Downs. “It's been a blessing to work there and use my skillset to help this organization grow and be more well-known,” she said. “We have this amazing service people have literally moved across the country to be part of.”

Fundraisers and direct donations are vital for the $1 million it requires each year to provide programs and services for Down Syndrome of Louisville members. The organization also has partnerships with Amazon Smile and Kroger Community Rewards for shoppers to choose DSL as a beneficiary. “But if you are not in a place to give financially then sharing our message to your friends and family, telling them what we do and why we do it, or starting a fundraising page are ways you can help,” Volz said. “Share your time and talents with us. Since we serve all age groups, we can find a place for almost any volunteer.”

Be sure to check out Facebook Live videos (@DownSyndromeOfLouisville) as DSL goes live on Fridays with Boogie Down Dance classes. “Our members love seeing new faces pop in to watch them perform,” Volz said.


Every cell in the human body has chromosomes: 46 pairs in most people, all numbered, and all of which split in two during gestation, with half inherited from the mother and half from the father. When chromosome No. 21 splits three ways instead of two, it results in a condition known as trisomy 21. It is also called Down syndrome after Dr. John Langdon Down, the physician in England who studied trisomy 21 in the 1860s.


Learn more about Down syndrome and check out volunteer and donation opportunities at


June 28-29

Down to Golf Tournament & Tee Off Cocktail Party
Audubon Country Club • Tickets Start at $125


August 21

Gallop Gala (Rescheduled from April)
Churchill Downs • Tickets start at $125


September 26

Steps to Independence Walk & 5K Celebration
Waterfront Park • Participation fee is $21


October 8

Down with Derby Fashion Show (Rescheduled from March)
Churchill Downs • Tickets start at $65

Posted on 2020-06-10 by By Kathie Stamps | Courtesy Photos