Wed, April 22
Deadline to Register for
I/DD Legislative Caucus
Wed, April 29
I/DD Legislative Caucus
Raleigh, NC
Mon, May 4
12:00 - 1:30 PM
Stepping Stones Seminar
Virtual - Day time
Tues, May 12
7-8 PM
Sip & Chat
Tues, May 19
12:00 - 1:30 PM
Stepping Stones Seminar
Virtual - Day time
Wed, May 27
5:30 - 7:30 PM
Stepping Stones Seminar
In Person - Evening
Tues, June 2
12:00 - 1:30 PM
Stepping Stones Seminar
Virtual - Day time
Tues, June 9
7-8 PM
Sip & Chat
Summer Speaker Series
Sat, June 13
9 AM - Noon
Fragile X Foundation Board Meeting
Wed, June 17
5:30 - 7:30 PM
Stepping Stones Seminar
In Person - Evening
Sun, July 12
11 AM - 3 PM
Xtraordinary Fragile X
Bowl-a-Thon
Tues, July 14
7-8 PM
Sip & Chat
Summer Speaker Series
Tues, Aug 11
7-8 PM
Sip & Chat
Summer Speaker Series
Register by April 22 for these April 29 Events held in Raleigh, NC!
Welcome Event
8:30 AM to 9:45 AM
Bulla Center with L’Arche North Carolina
301 West Jones Street
I/DD Legislative Caucus
11:00 AM to 1:00 PM
3rd Floor Auditorium
Legislative Building
16 West Jones Street
Fragile X Families Will Be Heard at the North Carolina I/DD Legislative Caucus
The North Carolina Fragile X Foundation is proud to share that Brittney Tillman and Steve Strom will be featured speakers at the North Carolina General Assembly’s I/DD Legislative Caucus on April 29, 2026. They will speak on behalf of North Carolina Fragile X families and share their own stories, along with the experiences of other families affected by Fragile X across our state. We hope you will join us for this event.
This year’s Caucus will focus on major issues affecting individuals and families with intellectual and developmental disabilities (I/DD), including the waiting list, the direct support workforce, and funding for services and supports. These are issues that touch daily life for many in the Fragile X community and shape whether people can live with stability, dignity, and meaningful support in their homes and communities.
Families and advocates are also invited to a Welcome Event hosted by L’Arche North Carolina before going to the Capitol.
Why this matters to our Fragile X community:
This is an important opportunity for lawmakers to hear directly from families living with Fragile X about the real impact of service gaps, workforce shortages, and underfunding. When our stories are shared in these spaces, they help put a human face on policy decisions and remind legislators what is at stake for people with I/DD and their families.
URGENT: You must register by April 22
Register here: https://secure.everyaction.com/nL-t2lUTQESRmT6GRWkdjg2
3 FREE Practical Seminars
Positive Parenting for Children with Disabilities
Parents, grandparents and caregivers of children with disabilities will find ways to approach the unique challenges being faced each day. These free seminars offer practical strategies to help make everyday life smoother and more rewarding. Click on the topics below to get more information or to register for both in person and virtual seminars.
Focuses on raising happy, confident children who can reach their potential by responding to challenging behaviors and encouraging positive ones. Topics include taking care of your own well being and reducing stress while enjoying family outings and participating in your community.
Monday, May 4: 12 Noon - 1:30 PM, Online/virtual seminar
presented by Triple P Positive Parenting Program
Register in Advance Here
Learn practical ways to teach new skills, develop social skills and improve daily routines. Course stresses encouraging learning with appropriate rewards, using the most effective strategies and tracking your child’s progress over time.
Tuesday, May 19: 12 Noon - 1:30 PM, Online/virtual seminar
presented by Triple P Positive Parenting Program
Register in Advance Here
Wednesday May 27: 5:30-7:30 PM, Live/in person
hosted by White Plains Children’s Center
White Plains United Methodist Church - 313 SE Maynard Rd., Cary
Register in Advance Here
You will improve your understanding of behaviors and learn to help your child adapt to new situations. Seminar helps create positive changes at home by teaching why and when are certain behaviors occurring, how small changes can encourage positive behaviors, developing action plans and how to track your child’s progress.
Tuesday, June 2: 12 Noon - 1:30 PM, Online/virtual seminar
presented by Triple P Positive Parenting Program
Register in Advance Here
Wednesday, June 17: 5:30-7:30 PM, Live/in person
hosted by NC Down Syndrome Alliance
NCDSA Training Center - 2621 Spring Forest Rd., Suite 102, Raleigh
Register in Advance Here
Each seminar is about 1.5 hours including a 30 minute Q&A session. Live sessions are held in the Raleigh/Durham area. Child care is available and light refreshments will be served during in person seminars, but space is limited. Please register in advance for all seminars.
Triple P is the world-acclaimed Positive Parenting Program, backed by four decades of
ongoing research. Our university-developed, evidence-based programs are used and
loved by families in over 30 countries. For more information, visit: triplep-parenting.com or email Kerry McCarthy Adams at kadams@dconc.gov
Save the Date for the 2026 Xtraordinary Bowl-a-Thon
In celebration of World Fragile X Day and the North Carolina Fragile X community, the Foundation is excited to announce this year’s Xtraordinary Bowl-a-Thon.
Sunday, July 12, 2026, 3:00 to 5:00 PM
Rainbow Lanes Family Fun Center
850 NC-42, Clayton, NC
Gather your family, friends, and supporters and join us for an afternoon of fun, community, and fundraising for the North Carolina Fragile X Foundation.
Form a team and help raise funds to support Fragile X awareness and family support in North Carolina. The top bowling score will once again earn bragging rights and take home the coveted Top Bowler Trophy.
Online Fundraising Pages for Teams and Individuals
This year, you also have the option to have an online fundraising page created for your team or for you as an individual participant. We will do all the setup for you. Once it is ready, you can share your personal link with friends and family who want to support you and the work of the North Carolina Fragile X Foundation. Let us know if you would like to have a fundraising page for your team or individual registration.
The North Carolina Fragile X Foundation is a 501(c)(3) nonprofit organization, so donations are tax deductible as allowed by law.
We are partnering with Zeffy this year for online donations. Zeffy is free for nonprofits and covers platform and credit card processing fees, so 100 percent of each donation goes directly to the North Carolina Fragile X Foundation. Donors can choose to leave an optional contribution to support Zeffy, but that does not reduce the amount NCFXF receives.
Each registration is $25 and includes one T-shirt. T-shirts are available in unisex adult sizes XS through 4X and youth sizes XS through XL. Shirt sizes run small, so order up one size.
Mark your calendar now:
- Deadline to register is July 6
- We’ll have the famous 50/50 raffle
- Wear your favorite Fragile X T-shirt
- All are welcome, including Fragile X families, friends, and supporters
- Not a bowler? Come be a Fan in the Stands
Can’t make it to Clayton on July 12?
Choose the virtual option. Register, collect your pledges, and bowl two games at your local bowling alley on or before July 6. Virtual registration also includes one T-shirt.
Registration goes live on April 24.
Sip & Chat Continues with Parents Leading New Opportunities to Learn
The North Carolina Fragile X Foundation is excited to continue Sip & Chat with the leadership of our new hosts, Brittney Tillman and Tom Miller. These monthly Zoom gatherings are a place for families to connect, share stories, ask questions, and build friendships with others who understand the Fragile X journey.
Sip & Chat is now held on the second Tuesday of every month from 7:00 to 8:00 PM. Everyone is welcome.
Along with creating space for conversation and support, Brittney and Tom are also inviting guest speakers to help our community learn more about topics that matter most to families. Based on feedback from our community, this summer’s Sip & Chat series will feature knowledgeable professionals speaking on important issues such as Medicaid, puberty and sexuality in the I/DD community, and IEPs and transition planning.
Before the summer speaker series begins, we invite you to join us on the second Tuesday in May for a special time of conversation and connection with families.
Upcoming Sip and Chat Dates
May 12, 7:00 PM
A time for conversation and connection with families
June 9, 7:00 PM
Guest Speaker: Lisa Nesbitt, Disability Rights NC
Topic: NC Medicaid, Innovations Waiver, 1915(i) services
July 14, 7:00 PM
Guest Speaker: Dr. David Tillman, Chair of the Public Health Program at Campbell University and NCFXF Board Member
Topic: Puberty and Sex in the IDD Community
August 11, 7:00 PM
Guest Speaker: Melissa Hazen, Exceptional Children Program Specialist
Topic: IEPs, different graduation routes, and transitions
Have an idea for a future topic or speaker? Email Brittney Tillman at tillmanrbrittney@gmail.com
Please register in advance. After registering, you will receive a confirmation email with information about joining the meeting.
Public Policy Update for the Fragile X Community
(as of April 2026)
Legislative Updates provided by the North Carolina Council on Developmental Disabilities
The official convening date for the North Carolina General Assembly’s Short Session is April 21, 2026. Until then, the state remains in extended 2025 session mode after the longest Long Session in state history ended without a full budget.
On March 9, Governor Stein released a proposed critical needs budget for the current fiscal year. His proposal focuses on urgent needs for FY 2025-2026 and includes funding for the Medicaid rebase, healthcare rate increases for state facilities, and salary increases for teachers, law enforcement, and other state employees. The proposed Medicaid amount of $319 million would fully fund the state’s Medicaid program for the rest of the fiscal year. Without that funding, the Division of Health Benefits is expected to run out of money before the fiscal year ends.
Legislative leaders in the House responded by saying they want to see stronger cost controls and safeguards, especially in programs they believe have a history of fraud and abuse. At the same time, House leadership has publicly said they will provide additional Medicaid funding if needed to maintain access to care.
Why it matters to our Fragile X community:
Many North Carolina families living with Fragile X rely on Medicaid-funded supports to keep loved ones safe at home, engaged in their communities, and supported at work or school. If the Medicaid rebase is not fully funded, families worry about provider instability, staffing shortages, and renewed pressure for service cuts.
The Joint Legislative Oversight Committee on Medicaid also met on March 9. One item of strong interest to the I/DD community was Research-Based Behavioral Health Treatment, which includes Applied Behavior Analysis, or ABA, for autism.
State leaders are concerned about dramatic growth in the use of ABA services. Presentations to the committee included perspectives from DHHS, families, and providers. Providers described efforts to ensure quality, individualized treatment planning, and adherence to best practice, while also acknowledging that not all providers operate this way. It was also noted that 47 percent of ABA providers in North Carolina do not have other services or a larger service presence in the state.
There appears to be growing agreement that changes are needed to improve individualized planning, strengthen supervision and oversight, tighten documentation standards, and better connect families to other supports. NC DHHS stated that it wants to preserve access to needed services while improving quality, protect rural regions from unintended harm related to telehealth changes, communicate clearly with families and stakeholders, and minimize administrative burden while increasing oversight and standardization.
Why it matters to our Fragile X community:
ISome individuals with Fragile X also receive autism-related services, including ABA. Families need quality services that are individualized, well-supervised, and connected to the broader needs of the person, not one-size-fits-all treatment. Any changes in this area could affect access, especially in rural communities.
The Prepaid Health Plans HR 1 Workgroup continues planning for implementation of new federal requirements. One of the first changes is new Medicaid eligibility rules for certain immigrant populations, which must be implemented by October 1, 2026. These changes will result in the loss of federal Medicaid funding for several groups, including many refugees, asylees, trafficking survivors, abused spouses and children, DACA recipients, and others with humanitarian protections.
Three more changes are scheduled for January 1, 2027. These include work or community engagement requirements, more frequent eligibility redeterminations, and a shorter retroactive coverage period after Medicaid approval.
These changes create more rules for beneficiaries to navigate and place more administrative burden on the state and counties. Technical problems or paperwork issues could lead to lapses in coverage and interruptions in care.
Why it matters to our Fragile X community:
Families living with Fragile X often depend on stable Medicaid coverage for medical care, therapies, behavioral health supports, and long-term services. More frequent paperwork and new eligibility requirements increase the risk of accidental coverage loss. Even short gaps in coverage can disrupt care and create serious stress for families.
Earlier this year, Secretary Kennedy appointed a completely new slate of members to the federal Interagency Autism Coordinating Committee, or IACC. The IACC has helped shape the nation’s autism research agenda for many years. None of the 21 newly selected members had previously served on the committee, and many support unproven causes and treatments related to autism. The new membership also reduced the number of self-advocates from seven to three.
In response, a new Independent Autism Coordinating Committee, known as the I-ACC, is being formed by former IACC members and supported by scientific and advocacy groups. The new group plans to meet alongside the federal committee. Both groups were scheduled to meet on March 19, but the federal IACC abruptly canceled its meeting.
Why it matters to our Fragile X community:
Families affected by Fragile X need research-based, trustworthy information. When federal advisory structures move away from evidence-based science, it increases the risk of confusion, misinformation, and attention to unproven treatments. This matters for Fragile X families too, especially where Fragile X overlaps with autism.
There is growing concern about efforts to dismantle the U.S. Department of Education and move some of its functions to other federal agencies. Recent interagency agreements would shift responsibility for school safety and security programs to the Department of Health and Human Services and transfer a higher education reporting portal to the Department of State.
At this point, special education oversight and the Office for Civil Rights have not been moved. However, administration officials continue to suggest that special education oversight could eventually be transferred elsewhere. Federal lawmakers have not approved a formal closure of the Department, and the most recent federal spending package did not authorize the Department to transfer its responsibilities. Still, advocates are concerned that these agreements are a way to begin dismantling the agency without Congressional approval.
Why it matters to our Fragile X community:
Students with Fragile X often depend on special education protections, school-based supports, and civil rights enforcement. Any weakening or fragmentation of federal education oversight could make it harder for families to resolve disputes, protect services, and ensure appropriate supports in school.
At the end of February, Vice President J.D. Vance, HHS Secretary Robert F. Kennedy Jr., and CMS Administrator Dr. Mehmet Oz announced new steps to crack down on fraud in Medicare and Medicaid. These actions included delaying $259.5 million in quarterly federal Medicaid funding in Minnesota while questionable claims are investigated, placing a nationwide moratorium on Medicare enrollment for certain equipment suppliers, and inviting stakeholder input on stronger fraud prevention efforts.
More recently, CMS has turned its attention to New York’s Medicaid program. Areas of focus include personal care, home health, non-emergency medical transportation, and behavioral health. Administrator Oz said one of the leading drivers of high spending appears to be the workforce delivering long-term care, especially home-based personal care services.
Efforts to stop fraud are important. Most families support strong oversight and responsible use of public dollars. But many disability advocates worry that a broad crackdown could go beyond fraud prevention and end up reducing access to essential Home and Community-Based Services for people with disabilities and older adults. Combined with the new HR 1 requirements, this increased scrutiny could disrupt care for vulnerable beneficiaries.
Why it matters to our Fragile X community:
People with Fragile X often rely on stable home and community-based services to live safely at home, participate in the community, and avoid crisis. When policymakers focus on cutting costs in long-term care and home-based services, families worry that the result will not be better oversight alone. It may also mean fewer workers, more paperwork, more service disruptions, and greater pressure on families already doing everything they can to hold supports together.