On July 15, the sounds of disco, classic hits, and early 2000s favorites will fill the halls of Red Stick Social. Guests will dance, bowl, bid on auction items, and gather with friends for an evening of fun.

But behind the music and celebration is a story that many in Baton Rouge have never heard.

For local mother Katie Martinez, the upcoming "Dancing Through the Decades" fundraiser is more than just a community event. It is a chance to shine a light on Prader-Willi syndrome (PWS), a rare genetic disorder that has shaped nearly every aspect of her family's life since her son Samuel was born.

"Prader-Willi syndrome is something I had never heard of until my son was born," Martinez said. "Having a child with a genetic syndrome can be devastating. There is this hope that you have for what your future would look like, and getting a diagnosis like this changes that vision drastically, especially when it is a rare syndrome."

Today, Samuel is 9 years old. But his journey began with challenges from the very start.

He spent seven weeks in the NICU due to severe feeding difficulties and underwent surgery at just one month old to receive a feeding tube. Because of the effects of PWS, he could not eat by mouth during his earliest months. At four months old, he began receiving nightly Human Growth Hormone injections, a treatment that continues today.

Like many children with Prader-Willi syndrome, Samuel experienced significant developmental delays caused by low muscle tone. He did not lift his head until six months old, crawl until 18 months, or walk independently until after his second birthday. Since birth, he has participated in speech, feeding, occupational, and physical therapy to help him reach important milestones.

While many of the physical challenges can be seen, some of the most difficult aspects of PWS are often invisible.

Prader-Willi syndrome affects approximately one in every 15,000 to 20,000 births and is caused by an abnormality on chromosome 15. One of its most challenging symptoms is hyperphagia, an overwhelming biological drive to eat that does not go away after meals.

For families living with PWS, everyday experiences that many people take for granted can become complicated.

Birthday parties, school celebrations, holidays, sporting events, and even casual family gatherings often revolve around food. For individuals with PWS, these situations can create intense anxiety and constant emotional strain.

"The more people are exposed to rare syndromes, the more understanding we as parents are able to get from families, friends, and the community," Martinez said. "And that is all we really want."

Throughout the years, Martinez says one organization has been there every step of the way: the Prader-Willi Syndrome Association USA (PWSA | USA).

From helping navigate school services and Individualized Education Programs (IEPs) to providing family support and connecting physicians with specialists familiar with the disorder, the organization has become an essential resource for her family.

"It has been a challenge throughout his life needing so much medical attention and constantly being faced with doctors and professionals who know less about the syndrome than you do," she said. "Throughout our many surgeries and hospital stays, PWSA | USA had medical staff available to talk with doctors for me. We would not have been able to get through many of the challenges that come with PWS without them."

The organization's impact has extended beyond medical support. Through advocacy programs, Martinez has traveled to Washington, D.C., twice to meet with lawmakers and discuss the needs of families affected by Prader-Willi syndrome.

Now she hopes to give back.

Her goal for Dancing Through the Decades is to raise $20,000 to support PWSA | USA's ongoing efforts in research, advocacy, education, and family services.

"We want PWSA | USA to continue being able to provide these invaluable resources to families," Martinez said. "I also want this fundraiser to be a way for people to hear about PWS and help with awareness, understanding, and inclusion."

The July event will feature music from the 1970s through the 2000s, dancing, bowling, raffle prizes, silent auction items, food, drinks, and opportunities to learn more about the PWS community. While designed primarily as an adults-only evening, families affected by PWS are welcomed to attend with their children, recognizing the unique challenges many caregivers face when it comes to finding opportunities for community connection.

PWSA | USA CEO Stacy Ward says the event represents the power of local communities coming together for a larger cause.

"We are so grateful to Katie for bringing Dancing Through the Decades to life," Ward said. "Her energy, generosity, and heart for the PWS community have made this celebration possible. Katie's dedication to raising awareness and funding for life-saving programs is a true inspiration and a powerful reminder of what community can accomplish."

For Baton Rouge residents, the event offers more than just a fun night out. It provides an opportunity to support local families navigating a rare diagnosis, learn about a condition many have never encountered, and help ensure that critical resources remain available for those who need them most.

Because sometimes awareness starts with something as simple as showing up, listening to a family's story, and choosing to dance for a cause.

Event Information

Dancing Through the Decades
Date: July 15, 2026
Time: 6:00 p.m. – 9:00 p.m.
Location: Red Stick Social, 1503 Government Street, Baton Rouge

For tickets, registration, or sponsorship information, visit give.pwsausa.org/decades.