From Johnston County To Washington: Family Raises Awareness For Fragile X

WASHINGTON, D.C. – A family from Johnston County took their advocacy to Capitol Hill on February 24, participating in National Fragile X Advocacy Day in Washington, D.C.

Brittany Tillman and her family met with North Carolina’s congressional delegation, including U.S. Sen. Ted Budd, to share their experience raising their youngest son, Miles, with a rare disease, Fragile X syndrome, and to discuss policy priorities affecting families across the state.

Fragile X syndrome is a rare genetic condition that impacts learning, behavior, and social development. Families often navigate a range of challenges, including developmental delays, anxiety, ADHD, and sensory sensitivities.

During their meetings, North Carolina advocates asked Congress to maintain and strengthen federal funding for Fragile X research and public health efforts. Such funding supports scientific studies, clinical trials, and long-term data collection that guide treatment decisions and improve outcomes over time.

They also emphasized the importance of keeping Fragile X eligible within a key federal peer-reviewed medical research program so researchers can continue competing for grant funding focused on Fragile X-associated conditions.

In addition, advocates expressed support for the SSI Savings Penalty Elimination Act (S.1234/H.R.2540), legislation that would update outdated asset limits for individuals receiving Supplemental Security Income. The current limits require many disabled adults to maintain extremely low savings in order to retain benefits. Advocates argue that modernizing those limits would provide greater financial stability and security.

One in 4,000 males and one in 6,000 females are affected by Fragile X.

The Tillman family said their goal was to highlight how federal research funding, healthcare policy, and disability benefit reforms directly affect families in Johnston County and across North Carolina.

National Fragile X Advocacy Day brought together families nationwide to share similar stories and encourage lawmakers to continue investing in medical research and policies that improve quality of life for individuals living with Fragile X.