Sister's Rare Disease Inspires Burleson Mom's Research Quest

When Rocky Tucker was 9 years old, doctors finally diagnosed her sister Callie with a disease so rare that only 120 other people in the world had it.

Alström syndrome affects just one in 500,000 people, causing blindness, hearing loss, heart disease, and diabetes. When 6-year-old Callie received her diagnosis in the late 1990s, doctors said she'd likely live to 12 or 15 years old. She fought until 28, passing away in July 2024.

Today, Tucker channels her grief into hope as executive director of Alström Syndrome International, a Burleson-based organization connecting families and funding research. In May, she's bringing doctors, researchers, and affected families from around the world to Fort Worth for an international conference and symposium.

The event happens every three years and serves a crucial purpose. With fewer than 50 Alström syndrome researchers worldwide and only about 2,000 diagnosed cases globally, these gatherings are lifelines for families facing an isolating journey.

Tucker remembers her first conference in 2004 when she was just 11. She finally met others who understood what it meant to live with a sibling fighting this disease. "It's a family," she said.

The conferences do more than build community. They advance science too. Researchers are currently conducting a study to identify the underlying cellular cause of Alström syndrome, work Tucker believes could lead to treatment breakthroughs in the coming years.

Right now, there's no cure and no comprehensive treatment. Doctors can only address individual symptoms to improve quality of life. Tucker knows of no patient older than 40, and most don't survive past their 20s.

Why This Inspires

Tucker's work transforms personal tragedy into progress for hundreds of families worldwide. By raising awareness, she's helping doctors recognize symptoms earlier, leading to faster diagnoses and better care. The conferences she organizes connect isolated families with expert physicians and give them something precious: community.

On February 28, which is Rare Disease Day, Tucker is hosting a fundraising dinner and auction at Lost Oak Winery in Burleson. The money will help volunteers attend the May conference to act as chaperones and translators for children with Alström syndrome, giving them a chance to explore Fort Worth while their parents focus on learning about the latest research.

When asked how she remembers Callie, Tucker doesn't hesitate. "She was resilient and brave and very sassy," Tucker said. "She was a big personality, and the strongest person I ever met."

Now Tucker carries that strength forward, doing her part to connect families with doctors and support the research that might one day save a life.