Two Moms Race to Fund $1B Gene Therapy Cure for Kids

Two Tennessee moms are turning their children's rare disease diagnosis into a race toward hope.

Judy Austin and Katie Sharp watched their kids struggle for years with seizures, speech delays, and missed milestones before genetic testing finally revealed the answer. Both children have SLC6A1, a rare neurological condition affecting fewer than 500 people worldwide that causes epilepsy, movement disorders, and intellectual disability.

"We were relieved to have a diagnosis but then they tell you it's really rare and they don't know much," Sharp said. Her daughter Cameron had her first seizure right after her third birthday, while Austin's son Gabe started having seizures before age two.

The mothers connected through SLC6A1 Connects, a nonprofit founded by another parent navigating the same journey. Late last year, they learned news that changed everything: a gene therapy cure exists.

The catch? Bringing that cure to patients could cost up to $1 billion. But for Austin and Sharp, the price tag isn't a reason to stop. It's a reason to start running.

On June 6, 2026, the moms are hosting Cameron and Gabe's Superhero Run for the Cure at Tennessee River Park. The 5K and family fun run will raise money for SLC6A1 research, treatment, and advocacy.

"We have the gene therapy. They have more dosages, we just need money," Sharp explained. "Unfortunately it takes a lot of money to get the cure to kids."

The Ripple Effect

The event arrives just months after Rare Disease Day on February 28, when families worldwide unite to raise awareness for conditions that affect small populations but create enormous challenges. For the estimated 500 families dealing with SLC6A1, this fundraiser represents more than a morning run. It's a lifeline toward treatments that could transform their children's futures.

Sharp wants her seven-year-old daughter to have every opportunity in life. Austin dreams of easier days ahead for Gabe, who struggles with coordination and attention in addition to seizures.

"For me, one thing that's surprised me since we found out that we have a child with a rare disease is how much it means to know that some people care," Sharp said. "Having a rare disease doesn't mean that you have to do it alone."

The superhero theme fits perfectly. These moms aren't waiting for someone else to save the day.