In partnership with the National Fragile X Foundation, the NCFXF condemns the use of "the R word"and asks for more respectful language to be used. We've taken it out of our language, please take it out of yours. It belongs nowhere.
Words matter.
NC Fragile X Foundation In the News
From Johnston County To Washington: Family Raises Awareness For Fragile X
North Carolina delegates sharing their story with Senator Ted Budd, seated (L to R): Dr. Kate Gregory from Asheville, NC, US Senator Budd, and Miles Tillman. Standing (L to R): Brittney Tillman, Andrew Miller, Thomas Miller, Tom Miller, and Brendon Miller from Clayton, NC. Contributed Photo
March 12, 2026 (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expressed support for the SSI Savings Penalty Elimination Act (S.1234/H.R.2540), legislation that would update outdated asset limits for individuals receiving Supplemental Security Income.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.
This article was published in The Johnston County Report on March 12, 2026.
The Dismantling of the Administration for Community Living:
A Critical Blow to Fragile X Families and Seniors
In a move that has sent shockwaves through the disability and aging communities, the U.S. Department of Health and Human Services (HHS) announced plans to dismantle the Administration for Community Living (ACL). This decision threatens to unravel essential services that millions of Americans rely on, including individuals with Fragile X syndrome (FXS) and older adults.
What Is the ACL and Why Does It Matter?
Established in 2012, the ACL unified several agencies to streamline support for older adults and people with disabilities. Its mission has been to enhance independence, well-being, and health across the lifespan. Programs under the ACL umbrella include Home- and Community-Based Services (HCBS), Centers for Independent Living, and State Councils on Developmental Disabilities. These initiatives have been pivotal in promoting community living and reducing reliance on institutional care.
The ACL was created to unify the federal government's efforts to help older adults and people with disabilities maintain their health and live in their communities. According to the agency, bringing federal work to support community integration under one umbrella has improved coordination and collaboration, reduced duplication of effort and service gaps, and enhanced overall program reach and effectiveness. ACL also reports that having aging and disability networks housed together has allowed for the sharing of expertise across systems and for more cohesive partnerships at federal, state, and local levels – especially where the needs of the people served intersect.
Impact on Individuals with Fragile X Syndrome
Fragile X syndrome, a leading cause of inherited intellectual disabilities, requires comprehensive support systems that extend beyond childhood. As individuals with FXS transition into adulthood, services such as vocational training, day programs, and community engagement become crucial. The ACL has played a significant role in facilitating these services.
A study published in the Journal of Autism and Developmental Disorders highlighted that many adults with FXS continue to reside with family due to limited independent living options and support services. Caregivers often express concerns about the future, particularly regarding the availability of programs that promote autonomy and community integration. The dismantling of the ACL threatens to exacerbate these challenges, leaving families without essential resources.
Consequences for Older Adults
The ACL has been instrumental in supporting older adults through programs like Meals on Wheels, adult day centers, and transportation services. These services not only address basic needs but also combat social isolation and promote preventive health care.
With the proposed reorganization, many of these programs face uncertainty. The potential loss of staff and consolidation of services could lead to reduced access and longer wait times. Advocates warn that such disruptions may force more seniors into institutional settings, increasing costs and diminishing quality of life.
Voices from the Field
Joseph Macbeth, President and CEO of the National Alliance for Direct Support Professionals, captured the concern of many in the disability services community when he said:
“This isn’t a policy debate. It’s a dismantling of everything we’ve fought for: community living, dignity, inclusion, and the professionalization of our field.”
His words highlight what’s at stake: the hard-won progress that has allowed people with disabilities and older adults to live with dignity in their communities.
A Call to Action
The decision to dismantle the ACL has been met with widespread concern. Advocates argue that this move undermines decades of progress in supporting vulnerable populations. The National Council on Disability emphasized that disrupting the ACL's structure would “undermine more than a decade of progress for older Americans and people with disabilities who want to live and thrive in their own homes and communities.”
For families affected by Fragile X syndrome and the aging population, the ACL's programs are not just services – they are lifelines. The North Carolina Fragile X Foundation urges policymakers to reconsider this decision and prioritize the well-being of our most vulnerable citizens.
Take Action Now
We urge all families and advocates to contact their U.S. Senators and Representatives immediately. Express your opposition to the dismantling of the ACL and emphasize the critical role it plays in supporting individuals with Fragile X syndrome and older adults.
Additionally, we encourage you to contact the National Fragile X Foundation and ask them to publicly support the continuation of the ACL and help lead a coordinated response. The voices of Fragile X families across the nation can help prevent a devastating setback in disability and aging policy.
For more information and to join our advocacy efforts, please contact the North Carolina Fragile X Foundation.
North Carolina Congressional Delegation
Make a Phone Call!
1. Call your U.S. House Representative and Senators with contact information below.
2. Spread the word! Encourage friends and family to call, email, or tag their elected officials on social media.
North Carolina’s Congressional Delegation – Contact Information
- Senator Thom Tillis: (202) 224-6342
- Senator Ted Budd: (202) 224-3154
- Representative Don Davis (District 1): (202) 225-3101
- Representative Deborah Ross (District 2): (202) 225-3032
- Representative Greg Murphy (District 3): (202) 225-3415
- Representative Valerie Foushee (District 4): (202) 225-1784
- Representative Virginia Foxx (District 5): (202) 225-2071
- Representative Addison McDowell (District 6): (202) 225-3065
- Representative David Rouzer (District 7): (202) 225-2731
- Representative Mark Harris (District 8): (202) 225-1976
- Representative Richard Hudson (District 9): (202) 225-3715
- Representative Pat Harrigan (District 10): (202) 225-2576
- Representative Chuck Edwards (District 11): (202) 225-6401
- Representative Alma Adams (District 12): (202) 225-1510
- Representative Brad Knott (District 13): (202) 225-4531
- Representative Tim Moore (District 14): (202) 225-5634
Your voice matters. Call today and make a difference!