UPCOMING EVENTS
New Day!
Tues, Jan 13
7-8 PM
Sip & Chat
New Day!
Tues, Feb 10
7-8 PM
Sip & Chat
February 23-24
National Fragile X Advocacy Day
Washington, DC
Sat, March 8
9:00 AM - Noon
Fragile X Foundation Board Meeting
New Day!
Tues, March 10
7-8 PM
Sip & Chat
From the North Carolina Fragile X Foundation
A Note from the Board Chair
As 2025 comes to a close, I find myself thinking about how far our family and our North Carolina Fragile X community has come.
Our son Adam turned 29 in December. This year he also celebrated six years at his job, something that has only been possible because of the Innovations Waiver and the direct support professionals who help him succeed at work and at home. Like many of you, we know firsthand that these supports are not abstract policy, they are the difference between uncertainty and a good, meaningful life. In those early years after Adam’s diagnosis, it was seeing other families who were a few steps ahead of us and having professionals like Dr. Ave Lachiewicz walk alongside us that helped us realize this diagnosis was not an ending, but the beginning of a different story, one still full of hope, growth, and possibility.
Over time, we discovered that our story is just one of many. The North Carolina Fragile X Foundation exists to walk alongside all families in our state who are navigating Fragile X and its associated disorders like FXTAS, whether they are just receiving a diagnosis or are well into adulthood. I am deeply grateful that our Foundation’s mission is to be there for families with reliable information, encouragement, and a sense of belonging, and to partner with professionals and advocates who share our commitment to better lives and brighter futures.
This year, we saw that sense of community in so many ways: at our Bowlathon at Rainbow Lanes in Clayton, at our Family Picnic in Burlington, during Sip & Chats where families could exhale and be honest, and in Washington, DC at 2025 National Fragile X Advocacy Day, where North Carolina families joined others from across the country to speak up for the federal investments in research and services our loved ones need.
As you read this year-end newsletter, I hope you see yourself and your family in these stories. Thank you for showing up, for sharing your experiences, and for standing with us in advocacy and support. We truly are stronger together.
With gratitude,
Steve Strom
Board Chair, North Carolina Fragile X Foundation
Medicaid Rate Cuts Reversed – What It Means for Fragile X Families
Good news and lingering questions: Medicaid rates are being restored to pre-October levels, but long-term stability is still in doubt. Read what this could mean for your services and what to watch for in the months ahead.
In October, North Carolina reduced Medicaid reimbursement rates for many services by 3 to10%. For families living with Fragile X who rely on Innovations Waiver, 1915(i) services, CAP/C, and CAP/DA, those cuts were deeply worrying. Lower rates make it harder for agencies to hire and keep direct support professionals, and some providers had already started capping the number of Medicaid patients they could see or considering layoffs.
On December 10th, Governor Josh Stein announced that those cuts are being reversed. Medicaid provider rates are being restored to what they were on Sept. 30, 2025, and the state will retroactively adjust claims back to that level for services billed since the cuts took effect.
For now, this is important short-term relief that may help stabilize:
- Community Living and Respite
- Day and employment services
- Other home- and community-based supports that help families keep loved ones at home
For North Carolina families living with Fragile X who use Innovations, 1915(i), CAP/C, or CAP/DA:
Your providers should see their payment rates return to previous levels, which may help prevent further caps on services or reductions in staffing.
This improves the chances that critical supports, like in-home assistance, community networking, and supported employment, can continue without sudden cuts driven by reimbursement changes.
Even with rates restored, state leaders have warned that Medicaid is facing a significant funding shortfall and may run out of money early in the new year without additional action by the North Carolina General Assembly. That means the long-term stability of Medicaid and the services your family relies on still depends on future decisions about funding.
Restoring the rates helps right now, but it does not fully solve the bigger problem.
- Check in with your providers. Ask if the rate restoration affects any planned changes to staffing, hours, or wait lists.
- Communicate with your care coordinator. Let them know if you experience disruptions in services or if you’re worried about losing key supports.
- Stay connected to NCFXF. We will continue to share updates as we learn more about how these funding decisions affect Innovations, 1915(i), CAP/C, and CAP/DA services in North Carolina.
We are deeply grateful to the providers and direct support professionals who continue to show up for our community in a time of uncertainty, and we will keep lifting up the message that stable Medicaid funding is essential for families living with Fragile X in North Carolina.
Join Us for National Fragile X Advocacy Day – February 23 - 24, 2026
Mark your calendars! The 22nd National Fragile X Advocacy Day will take place in Washington, DC, on February 23–24, 2026. This is a powerful opportunity for North Carolina families, self-advocates, siblings, and professionals to share our stories directly with members of Congress and their staff.
Advocacy Day brings together people from across the country to:
- Explain what life with Fragile X looks like, day to day
- Ask for continued and increased federal research funding
- Support policies and programs that strengthen services, supports, and quality of life for individuals and families living with Fragile X
- A training day to help you feel prepared and confident sharing your story
- Scheduled visits on Capitol Hill with Congressional offices
- The chance to connect with other families, self-advocates, and professionals from across the country
You don’t need prior advocacy experience, just a willingness to speak from the heart about your family’s journey.
Registration is now open through the National Fragile X Foundation:
https://fragilex.org/get-involved/advocacy/advocacy-day/
If you’re considering going, we encourage you to register early so you have time to plan travel, lodging, and any needed supports.
We understand that attending such events can be financially challenging. Here are some ways to help cover the costs:
- NFXF Scholarships: The NFXF offers scholarships to assist individuals and families with limited financial resources. Scholarship applications are being accepted through December 16, 2024. For more information, visit the NFXF website.
- Jean Wolff-Rossi Fund for Participant Involvement: The North Carolina Council on Developmental Disabilities (NCCDD) offers the Jean Wolff-Rossi Fund to help cover expenses for seminars and conferences. This fund can reimburse costs for child care, personal assistance services, hotel/lodging, and transportation. Make sure to submit your application at least 15 days before the event for in-state events and 30 days for out-of-state events. For more info and to apply, visit the NCCDD website.
- First in Families of North Carolina also has funding to attend conferences. Please e-mail First in Families of North Carolina at info@fifnc.org to inquire about eligibility.
If you have the Innovations Waiver, you can ask your care coordinator for funding to cover the costs of attending Advocacy Day. Your care coordinator can provide guidance on how to request these funds.
Innovations Waiver Funding Ideas to Cover Conference Attendance
- Natural Supports Education (S5110, S5111)- Provides funding for family members of waiver recipients for educational opportunities such as conferences.
- Individual Goods and Services (T1999) - Provides funding for waiver recipients that could be used for opportunities such as attending conferences.
- Community Networking Class/Conference (H2015 U1) - Provides funding for waiver recipients that could be used for opportunities to attend meetings and conferences that are also attended by non-disabled peers.
- Employer Supplies (T2025 U2) - Provides funding for staff and the employer to attend training and conferences.
- Accrued Funds – For families who use self-direction for the Innovations waiver services, check with your care coordinator and/or your fiscal agent (Accumen or Secure Direction). Your community guide can help you write a request to update your Individual Service Plan (ISP) or utilize your accrued funds. Remember that decisions for approval take about 2 weeks so plan accordingly.
If you are interested in attending as part of the North Carolina delegation, please contact
Steve Strom at steve@ncfragilex.org
We’d love to coordinate as a group, support first-time advocates, and make sure North Carolina has a strong, visible presence in Washington, DC in 2026, standing together for research, services, and a better future for everyone living with Fragile X.
Don't miss this opportunity to make a difference for the Fragile X community. Your participation can drive significant change and help create a better future for individuals with Fragile X syndrome. For more information and to register, visit the NFXF website.
Support the North Carolina Fragile X Foundation with a 2025 Year-End Gift
As this year comes to a close, we invite you to consider a year-end gift to the North Carolina Fragile X Foundation. Your generosity helps sustain a community where families don’t have to walk this journey alone.
In 2025, support from people like you helped us:
Your donation helps us provide information, connection, and advocacy for individuals and families affected by Fragile X Syndrome. Every contribution helps us reach more families, offer more support, and keep Fragile X visible in important state and national conversations.
Making a donation is easy. Visit the NC Fragile X Foundation donation page to give online. You can:
- Make a one-time year-end gift, or
- Set up a recurring monthly donation to support our work throughout 2026.
Many employers offer matching gift programs that can double or even triple your contribution. Check with your HR department to see if your company participates and follow their steps to submit a match for your gift to NCFXF.
Together, we can make a difference for Fragile X families in North Carolina.
By giving this holiday season, you help us continue our work, deepen our impact, and welcome new families into a community that understands. Thank you for being part of this mission.
Looking Ahead to 2026: What We’re Watching
Going into 2026, the North Carolina Fragile X Foundation will be watching several key issues close to home and at the national level.
We’re especially focused on:
- Medicaid funding stability, particularly for Innovations, 1915(i), CAP/C, and CAP/DA, and how any changes affect access to the home- and community-based services that keep our loved ones at home and in the community.
- The direct support workforce crisis, including wages, retention, and training for direct support professionals. National surveys show that most providers of community services for people with intellectual and developmental disabilities are struggling with staffing shortages, leading some to turn away new clients or even close programs.
- Access across regions, especially in rural and underserved parts of North Carolina, where families may face longer waits, fewer provider options, or more fragile staffing.
We are also keeping an eye on national developments that can ripple down to North Carolina:
- Fragile X research and clinical trials. Several late-stage and new clinical trials are underway or nearing results, testing potential new treatments and approaches for Fragile X. The outcomes of these studies could shape future treatment options and research priorities for our community.
- Federal Medicaid and long-term services and supports policy. Recent federal laws and proposals include significant reductions in overall Medicaid funding over the coming decade and changes to how home- and community-based services are financed and regulated. These decisions could affect things like HCBS waiting lists, state flexibility, and the availability of long-term supports for people with intellectual and developmental disabilities.
- New federal initiatives that may change how states pay for care. For example, there is a new federal model designed to lower Medicaid prescription drug costs by tying prices to those paid in other countries, beginning in 2026. How states respond to initiatives like this can influence what medications are available and affordable for people on Medicaid, including those with Fragile X.
We will continue to:
- Share updates in language that families can understand
- Lift up North Carolina family stories when policy decisions are being made
- Work in partnership with providers, advocates, and allies who care about strong home- and community-based services
As research and policy conversations evolve, we’ll keep asking a simple question: What does this mean for families living with Fragile X in North Carolina? And we’ll keep bringing you the clearest answers we can.
Join Us in 2026 for the Relaunch of NCFXF Sip & Chat Zoom Calls!
Starting in January 2026, Zoom calls will be 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!
Mark Your Calendars for 2nd Tuesday Dates in 2026
- January 13, 2026
- February 10, 2026
- March 10, 2026
- April 14, 2026
- May 12, 2026
- June 9, 2026
- July 14, 2026
- August 11, 2026
- September 8, 2026
- October 13, 2026
- November 10, 2026
- December 8, 2026
Please register in advance. After registering, you will receive a confirmation email about joining the meeting. Click here to register.
Special thanks to our founder and long-time host, Kerry McCarthy Adams. We appreciate her many hours spent on organizing and presenting these special Zoom meetings. We love you Kerry!
2026 Dates for Foundation Board Meetings
Board Meeting Dates:
Saturday, 9AM to Noon
- March 14, 2026
- June 13, 2026
- September 12, 2026
- December 6, 2026
Anyone interested is welcome to attend NC Fragile X Foundation board meetings in the calendar of events below either in person or via zoom. At the start of each meeting, the board opens the floor for public comments, so please be prompt and limit your comments to the designated time.
The Zoom link for quarterly board meetings is:
https://us06web.zoom.us/j/89428474878?pwd=KTnp0zm2b796NMYYuJ2M23aTjkhF07.1
Meeting ID: 894 2847 4878
Passcode: 408244
Location: 921 Morreene Rd, Durham, NC 27705