Thurs, March 5
3:00 - 3:45 PM
Olmstead Webinar
Tues, March 10
7-8 PM
Sip & Chat
Sat, March 12
9:00 AM - Noon
Fragile X Foundation Board Meeting
Sun, July 12
11 AM - 3 PM
Xtraordinary Fragile X
Bowl-a-Thon
March is Developmental Disabilities Awareness Month!
This March, NCFXF is proud to celebrate Developmental Disabilities Month with the launch of We’re Here: Then, Now, Always campaign. The national campaign recognizes a simple truth: people with developmental disabilities have always been part of our communities – and always will be.
Same community. Same goals. Same future.
North Carolina Families Brave the Snow to Share Fragile X Stories in Washington, DC
This year’s National Fragile X Advocacy Day will be remembered for two things: bitter cold and record snowfall up and down the East Coast and the courage of families who showed up!
Despite weather that disrupted flights and kept some delegations at home, two North Carolina families made it to Washington, DC to represent our state. Over two packed days, they visited both U.S. Senators from North Carolina and two Members of the U.S. House, carrying with them the stories of loved ones living with Fragile X back home.
For many, it was stepping into something completely new.
“I was inspired! I’ve never done anything like this before,” shared Kate Gregory, a North Carolina parent. “I was amazed by the access we had to the leaders of our government … that common citizens with no clout or money or power can come all the way in and have their say about the details of their lives that matter to them. I was proud to stand with all of them and be part of our NC team.”
The Tillman-Miller family, a blended family of parents, siblings, and a self-advocate, brought a powerful mix of perspectives. They talked about school, work, daily supports, and the hard choices families face when services are unstable or underfunded.
Tom Miller, parent: “It felt amazing to be a voice and contribute to a Fragile X community. They give it their all every day, and we hope that the reps do their part.”
Thomas Miller, sibling: “Even if we don’t see change we made a difference.”
Miles Tillman, self-advocate: “I liked sharing my story with congressmen people.”
For the siblings, what started out as intimidating quickly became something they didn’t want to stop doing:
Brendon Miller, sibling: “The experience was at first very scary but when we met with the first senator it was hard not to talk.”
Andrew Miller, sibling: “I felt like our story was heard and we were making a difference.”
As a blended family, the day also held special meaning at home:
Brittney Tillman, parent: “It’s so comforting to be amongst Fragile X family while advocating for our family and friends. It feels so empowering to find your voice and strength to help make a change to better the lives of those in the FX community. Seeing my son advocate for himself and his brothers and bonus dad stand beside him means everything.”
Along with their stories, the North Carolina delegation brought clear, focused requests that directly affect families here:
- Keep Fragile X research and public health work moving forward.
Advocates asked Congress to continue and strengthen federal funding for Fragile X-associated conditions – supporting basic science, clinical trials, and long-term public health data that help doctors and families understand what works over a lifetime. - Make sure Fragile X stays eligible for a key federal medical research program.
They requested that Fragile X remain on the list of authorized topics for a major peer-reviewed medical research program, so investigators can continue proposing and winning grants focused on Fragile X. - Update outdated savings rules for people with disabilities.
They urged support for the SSI Savings Penalty Elimination Act (S.1234/H.R.2540), which would modernize asset limits for people on Supplemental Security Income (SSI). Current limits, largely unchanged since the 1980s, force many disabled adults to stay almost completely “un-saved” to keep benefits. Updating these rules would let people with disabilities build modest emergency savings without being punished for it.
In simple terms, our NC advocates asked Congress to keep investing in better treatments, better data, and a more secure financial future for people with Fragile X and their families.
Not everyone can travel to Washington, especially during a winter storm. But you don’t have to attend Advocacy Day to make a difference.
Here are two simple ways to advocate from home:
- Contact your Members of Congress.
- Look up your two U.S. Senators and one U.S. Representative below.
- Call or email their offices and say who you are, where you live, and your connection to Fragile X.
- 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
2. Use a simple four-part message:
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- Who I am: “My name is [Name], I live in [City, NC], and I’m part of the Fragile X community.”
- Why it matters: One or two sentences about your loved one and what supports make a difference.
- What I’m asking: For example, “Please continue funding Fragile X research and support efforts to update SSI savings rules so people with disabilities can save modest emergency funds without losing benefits.”
- Thank you: “Thank you for your work on behalf of people with disabilities and their families.”
It doesn’t have to be long or perfect. Just like the families who braved the snow in DC, your voice adds up. When members of Congress hear from multiple North Carolina families with similar messages, it helps them understand that Fragile X is not rare in the lives of the people they serve. Your voice matters. Let’s stand together to protect Medicaid and secure funding for Fragile X research. Call or e-mail today and make a difference!
Your story doesn’t have to be long or perfect. Just like the families who braved the snow in DC, your voice adds up. When members of Congress hear from multiple North Carolina families with similar messages, it helps them understand that Fragile X is not rare in the lives of the people they serve. Your voice matters. Let’s stand together to protect Medicaid and secure funding for Fragile X research. Call or e-mail today and make a difference!
Click here to view all the NCFXF photos from National Advocacy Day
Board Retreat Sets Direction For Next Three Years
On February 6 and 7, the board of the North Carolina Fragile X Foundation held a focused retreat to set direction for the next three years. The retreat brought board members and facilitators from CCR Consulting together for an evening dinner on Friday and a full working day on Saturday.
The goal was simple and ambitious:
- Clarify where NCFXF is heading.
- Choose a small set of priorities.
- Leave with a plan that respects the limits of a volunteer board and the real lives of families.
Friday evening. Stories and shared purpose
Friday night started with dinner and conversation. Each board member shared a short story about how Fragile X touches their life and why they serve on the board.
Saturday. Vision, priorities, and a 90-day plan
On Saturday, the facilitator guided the board through a series of short working sessions.
- The group looked back at the past few years. Board members named specific wins.
- The growth of the Bowlathon and the Family and Friends Picnic
- The importance of Sip and Chat sessions for parents and caregivers
- A louder voice for Fragile X in state policy conversations
Board members also named lessons. They saw patterns. Big ideas, but limited time. A small number of people taking on most of the work. A need for more structure, not more pressure.
First, the group looked at the world around families in North Carolina.
- Medicaid waivers and long waitlists
- Strain on schools and IEP teams
- Gaps in mental health and adult services
- New information about Fragile X and related conditions
Then the board stepped into the future. They asked one question.
“If it is three years from now and NCFXF has done its job well, what looks different for families in North Carolina?”
Small groups wrote future “headlines” and short descriptions. Themes repeated across the room.
From those themes, the board shaped a draft three-year vision and moved to priorities. After discussion and ranking exercises, the board focused on a short list of strategic areas.
These included:
- Family support and connection
- Education and information for families and professionals
- Advocacy and policy presence in North Carolina
- Fundraising and financial stability
- Board health and structure
The group then moved from big goals to concrete steps.
By the end of the afternoon, each priority had at least two named actions for the next three months and a board member champion to keep it moving.
One important part of the retreat was an open talk about capacity. Board members named the tension between the size of the needs and the size of the board. Everyone around the table has work, family responsibilities, and often direct caregiving roles.
The board agreed on several principles including:
- Stay grounded in the mission and in families
- Focus on a few things and do them well
This honesty will shape how the board sets timelines, organizes committees, and asks for help from volunteers and partners.
For partners and supporters, the retreat signals our next chapter. The board remains a hands-on group, but will work toward a structure that supports growth, fundraising, and collaboration.
Over the next few months, the board will:
- Finalize the three-year vision and share a short version with the community
- Align board committees and working groups with the new priorities
- Begin work on the first set of ninety-day action items
- Look for ways to involve more volunteers in specific, well-defined roles
You will see more updates on this work in upcoming newsletters, at events, and on the website.
Fragile X Parent Joins Local Early Childhood Board
We’re proud to share that Kerry McCarthy Adams, a North Carolina Fragile X parent and long-time advocate, now serves on the Board of Directors for Wake County Smart Start, the local early childhood partnership that helps young children and families in Wake County get a strong start in life.
Kerry brings both professional expertise in early intervention and personal experience as a parent of a child with Fragile X. She has lived in Wake County for nearly two decades and has been a consistent voice for inclusion through her work with:
- Local early intervention and interagency coordinating councils
- Parent–teacher organizations and special education advisory groups
- The North Carolina Fragile X Foundation, including co-leading webinars and serving as a host for our Sip & Chat support group.
Serving on an early childhood board means Kerry can:
- Help shape community-level decisions about how resources for young children and families are used
- Ensure that children with disabilities and developmental differences areincluded in planning from the beginning, not as an afterthought
- Bring the Fragile X perspective into conversations about child development, early intervention, and family support
For the North Carolina Fragile X community, Kerry’s leadership is a reminder that parents’ voices belong at every table where decisions are made about children and families, local, state, and national.
We are grateful for her service and excited to see how her work on the board helps create a stronger, more inclusive early childhood system for all children, including those with Fragile X.
Public Policy Update
(as of February 23, 2026)
Republished from the North Carolina Council on Developmental Disabilities
We have inserted sections that show you why these matter to the Fragile X Community.
On January 22, 2026, the House passed the remaining six appropriation bills, including Labor, Health and Human Services, and Education, Defense, Transportation and Housing and Urban Development, Financial Services and General Government, State and Foreign Operations, and Homeland Security. This package of six bills was sent to the Senate for their approval. On January 30, 2026, the Senate passed all but Homeland Security, which was removed to allow for additional negotiation in the wake of the shootings by ICE in Minneapolis.
Since the package changed, it was sent back to the House, which passed the package of five bills on February 3, 2026. Below are key parts of the new budget that affect people with disabilities.
- Administration for Community Living (ACL): $2.5 billion
- UCEDDs: level funded at $43,119,000
- Health Resources and Services Administration (HRSA): $8.9 billion, an increase of $929 million above FY2025
- LENDs: not specifically cited, but Autism and Other Developmental Disabilities (which includes LENDs) has a $1 million increase to $57,344,000, so we can assume LENDs are level funded
- State Councils on Developmental Disabilities: level funded at $81,000,000
- Protection & Advocacy: level funded at $45,000,000
- National Institutes of Health (NIH): $48,716,000,000, an increase from FY25 and from the President’s budget
- Voting Access for Individuals with Disabilities: $10,000,000
- Center for Medicaid and Medicare Services program management: level funded at $3.7 billion
- Rejects the Administration's proposal to consolidate the Administration for Children and Families and the Administration for Community Living.
Why it matters to our Fragile X community:
NIH funding and continued investment in developmental disability programs support the research, data, and services that lead to better diagnosis, treatment, and care for people with Fragile X and their families. Stable funding for ACL, DD Councils, and Protection and Advocacy helps protect community living and civil rights across the lifespan.
Individuals with Disabilities Education Act (IDEA) funding was increased by $20,000,000
- Grants to states (Part B): $14,233,704,000
- DEA Part C: $540,000,000
- Head Start: $12,356,820,000, an increase of $85 million from 2025
- Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSIDs): $13,800,000
- Bill highlights that Congress has not provided the authority to the Education Department to transfer its responsibilities to other agencies.
Why it matters to our Fragile X community:
Increases in IDEA and continued support for TPSID and Head Start help children and young adults with Fragile X get the individualized education, early childhood supports, and inclusive college options they need to learn, work, and participate in their communities.
The Department of Health and Human Services appointed 21 new members. There is some concern from advocates that many of the new appointees support unproven causes and treatments of autism. In addition, the number of self-advocates on the committee has been reduced from 7 to 3. The Autism Science Foundation released a statement on the new IACC membership in which they say that this new membership “does not reflect the breadth of the autism community” and “disproportionately represents a very small subset of families who believe vaccines cause autism, while excluding the overwhelming majority of autistic individuals, families, and advocates who support evidence-based science.”
Why it matters to our Fragile X community:
Federal advisory bodies that drift away from evidence-based science increase the risk that families will hear mixed messages about causes and treatments. Families living with Fragile X need clear, research-based guidance so they can make safe decisions and avoid wasted time and money on unproven approaches.
The FDA removed a webpage titled “Be Aware of Potentially Dangerous Products and Therapies that Claim to Treat Autism” from its website (link goes to archived page). Previously, the page warned about practices like chelation therapy and hyperbaric oxygen therapy, which are often marketed towards parents and family members of children with autism as potential cures or treatments for autism. The FDA page included quick tips to help people identify false or misleading claims about treatments or products that could potentially cause harm to individuals with autism.
Why it matters to our Fragile X community:
Families of children and adults with Fragile X are also targeted with unproven and risky “treatments.” Clear information from trusted sources helps families tell the difference between real, evidence-based help and dangerous or misleading products and therapies.
On January 23, nine states renewed a lawsuit against Section 504 of the Rehabilitation Act and the integration mandate. Under Section 504, the integration mandate ensures that people with disabilities can receive services in the community instead of institutions. The nine states are challenging a Department of Health and Human Services (HHS) rule about the integration mandate, which says that any entity receiving funding from HHS needs to serve people with disabilities in the most integrated setting appropriate. The nine states say that this rule is unlawful and unconstitutional.
This lawsuit is a revised version of an earlier case, in which 17 states argued that Section 504, as a whole, is unconstitutional. The states later withdrew their claim after advocacy from the disability community. Now, Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, South Dakota, and Texas are renewing the lawsuit.
If successful, it would be harder for disabled people to enforce their right to live and participate in the community.
Why it matters to our Fragile X community:
The integration mandate helps protect the right of people with Fragile X to receive services in their homes and communities instead of institutions. Weakening these protections would make it harder to secure community-based services and could increase pressure toward more segregated and restrictive settings.
North Carolina is the only state in the U.S. without an enacted budget for the 2025-2027 biennium. State operations continue under previous funding levels. It is not expected that the budget will be addressed until the General Assembly returns for the short session in April 2026.
There are impacts of not having a budget on several areas, including teachers' raises and state employees' raises. The area that has been on advocates' radar is the shortfall in the Medicaid rebase. The Department of Health and Human Services enacted Medicaid rate cuts back in October as a result of the shortfall. The cuts were in response to the General Assembly allocating dollars that are projected to fund Medicaid only through April 2026. Then, during the second week of December, Governor Stein announced that the Medicaid cuts to providers that were put in place on October 1, 2025, were ending. The cuts were reversed following successful legal challenges.
So the shortfall remains, and the responsibility now falls back to the General Assembly to provide a long-term financial solution for Medicaid. Legislative leadership has suggested that they will monitor the Medicaid situation in the time leading up to when they return.
Why it matters to our Fragile X community:
Many North Carolina families living with Fragile X rely on Medicaid waivers and home and community-based services to keep their loved ones at home, at work, and engaged in the community. Ongoing uncertainty about the Medicaid rebase and possible future cuts makes it harder for providers to plan and staff services and raises real concern about the stability of Innovations, 1915(i), CAP/C, and CAP/DA supports.
A workgroup has been convened, which includes a Division of Health Benefits team and representatives from the Health Plans in North Carolina. The workgroup is developing plans to address the requirements from HR 1, which are designed to reduce Medicaid spending. Some of the first initial areas to be addressed are below.
(Sec. 71109) “Qualified Alien” Medicaid Eligibility. This section has to be enacted by October 1, 2026. Beneficiaries with an immigration status that is no longer eligible will be disenrolled from Medicaid. This will result in loss of funding for previously eligible populations, including most refugees, asylees, victims of human trafficking, abused spouses and children, DACA (Deferred Action for Childhood Arrivals) recipients, individuals whose deportation is being withheld or who were granted conditional entry, and individuals who received humanitarian parole. Hospitals and providers will not be able to receive federal Medicaid reimbursement for care provided to these populations.
There is also a provision that eliminates the higher Medicaid percentage under ACA for emergency care provided to immigrants who would qualify for Medicaid except for their status. These modifications to FMAP payments will likely lead to lower Medicaid payments to states, requiring them to fund more to maintain current reimbursement levels.
(Sec. 71107) Eligibility Redeterminations for Certain Individuals. This requirement must be in place by January 1, 2027. Most beneficiaries receiving coverage through Medicaid expansion will have eligibility re-evaluated every 6 months (this is currently every 12 months).
(Sec. 71112) Limits on Retroactive Medicaid / CHIP Coverage. This must be in place by January 1, 2027. Beneficiaries who apply for Medicaid may only receive up to 1 month (MXP) or 2 months (all other Medicaid) of retroactive coverage. This is a reduction from 3 months.
These federal requirements place additional administrative burden on North Carolina and, along with other cuts to Medicaid, will create a loss of services over the next several years.
Why it matters to our Fragile X community:
Tighter eligibility rules, new work and engagement requirements, more frequent redeterminations, and limits on retroactive coverage all increase the risk of gaps in Medicaid coverage and services. For people with Fragile X who depend on stable medical, behavioral, and long-term supports, even short breaks in coverage can disrupt care, strain families, and increase the risk of crises or institutional placement.
Join Us March 10 at 7 PM for Next Sip & Chat Zoom Call!
Zoom calls are now held on the 2nd Tuesday of every month from 7-8 PM. Join our new hosts Brittney Tillman and Tom Miller to catch up, get to know each other, share stories, ask questions and focus on building friendships. Everyone is welcome!
Please register in advance. After registering, you will receive a confirmation email about joining the meeting. Click here to register.
Webinar: Olmstead and North Carolina’s Olmstead Plan
Join DMH/DD/SUS for an informative webinar on the landmark Olmstead decision and what it means for people with disabilities in North Carolina. This session will:
- Provide a brief overview of the Olmstead ruling
- Explain why the decision is important for disability rights
- Describe current actions and initiatives in North Carolina related to Olmstead compliance
- Share details about North Carolina’s Olmstead Plan and how the state is advancing community integration
Thursday, March 5, 2026
3:00 - 3:45 PM
Register for the webinar
Accessibility: Closed captioning and American Sign Language interpreters will be provided.
Why this matters to our Fragile X community
Olmstead affirms the right of people with disabilities to receive services in the most integrated setting appropriate. For individuals with Fragile X, that means real opportunities to live, work, and participate in their communities instead of being pushed toward institutional settings. North Carolina’s Olmstead Plan shapes how the state invests in housing, home and community-based services, and supports like the Innovations Waiver. When you understand Olmstead, you understand the legal foundation behind the services that help your family member with Fragile X stay in the community with needed supports.
Xtraordinary NC Fragile X Bowl-a-Thon Set for Sunday, July 12, 2026!
In celebration of World Fragile X Day and the NC Fragile X community, the Foundation proudly announces this year’s Xtraordinary Bowl-a-Thon!
Sunday, July 12, 2026 from 3 to 5 PM
Rainbow Lanes Family Fun Center
850 NC-42, Clayton, NC
Join us as bowlers or spectators in July for an afternoon of fun, friendship, and fundraising – last year we raised $6,000 to support families affected by Fragile X Syndrome across our state. Read more here.
