UPCOMING EVENTS
Wed, July 16
7-8 PM
Sip & Chat
Sunday, July 20
3 - 5 PM
Fragile X
Bowl-a-Thon
Tuesday, July 22
North Carolina Fragile X Awareness Day
September 30, 2025
Deadline to take NCCDD 5 Year Plan Survey
October (TBD)
Fragile X Family Picnic
July is Fragile X Awareness Month –
Celebrate, Act and Advocate!
July is Fragile X Awareness Month and everyone is encouraged to celebrate, advocate and act to support all of those with Fragile X and other developmental disabilities.
CELEBRATE . . .
Strike Out Fragile X This July!
NC Fragile X Bowl-a-Thon
Sunday, July 20, 2 - 5 PM
Rainbow Lanes Family Fun Center
850 NC Hwy 42 W, Clayton, NC 27520
There’s no better way to celebrate Fragile X Awareness Month than by joining us for a fun-filled afternoon that brings families and friends together in support of an incredible cause!
Whether you’re aiming for strikes or just showing up for smiles and connection, your participation helps raise awareness and funds for the North Carolina Fragile X Foundation. See details below:
- Bowl two games 3:00 - 4:00 PM at Rainbow Lanes in Clayton
- Registration and check-in begins at 2:00
- Free Bowl-a-Thon T-shirt for every registered bowler registered before July 12
- Our exciting 50/50 Raffle – a chance to win cash while supporting a great cause
- After-Bowl-a-Thon celebration with snacks and drinks provided by the amazing Jennifer Keith! Her creativity and generosity bring our events to life – and this year is no exception.
- FREE rides on the Himalayan ride after the Bowl-a-Thon ends hosted by Adam Martin
- Register to Bowl - solo or with a group. No team? No problem—we’ll match you!
- Start a Team – Invite your family, friends, coworkers, or neighbors to bowl and raise funds with you.
- Share Your Why – Set up a fundraising page and spread the word.
- Double Your Impact – Ask your employer about donation matching programs.
A heartfelt thank you to Harmony Biosciences for their generous corporate sponsorship of this year’s Bowl-a-Thon. And a huge shoutout to Jennifer Keith for her extraordinary hospitality and decorations that make our events truly special.
Fragile X Awareness Day is July 22, 2025
Let's make this Fragile X Awareness Day a powerful moment for telling our stories, shaping policy, and making North Carolina stronger for Fragile X families. Our voices matter now more than ever, so reach out to your congressmen and senators to shape national priorities and share your own story.
Adam Strom from Wake Forest, NC
Adam Strom is a vibrant and joyful young man with Fragile X Syndrome, a genetic condition affecting his learning, behavior and social interactions; he experiences cognitive and developmental delays requiring lifelong support, including sensory sensitivities and socialization difficulties due to Fragile X and Autism. He enjoys singing with his favorite music videos, weekly workouts at the gym with a personal trainer, and playing Bingo on Zoom with friends from across the country. He stays in touch with his friends with disabilities through bi-weekly virtual meet-ups to strengthen and build a sense of community. His infectious enthusiasm and hugs delight everyone he meets.
Through the North Carolina Innovations Medicaid waiver, Adam benefits from essential supports that help him with daily activities such as bathing, dressing, household chores, and employment and is developing independent living skills for the future.
At age 28, Adam lives with his parents, who are in their 60s. He will need continuous support over his lifetime as he faces these challenges alone. His parents are deeply concerned about his transition to independent living while also managing their own financial challenges related to retirement and healthcare costs. Adam’s parents envision a future where he fully and independently lives his best life in his own place, supported by paid caregivers, professionals, friends, and his faith community. They want him to continue his competitive integrated employment at Cambridge Village of Apex, where he is respected and valued. All of this is made possible through Medicaid funding which is essential for Adam’s care and support.
ACT . . .
Learn more about state and national policies and programs that help families and communities living with Fragile X.
Get the Facts about ABLE Accounts
Powerful tools to build financial security and independence for those living with Fragile X and other disabilities
Learn how NC ABLE can help your loved one save without losing benefits. Saving for the future doesn’t have to mean giving up benefits. With NC ABLE, your loved one can have both. Families in the Fragile X community often face a tough challenge: how to save for the future without putting critical benefits like SSI or Medicaid at risk. That’s where ABLE accounts come in.
Created through federal law and available in North Carolina, ABLE accounts allow individuals with disabilities to save money tax-free for qualified expenses – without jeopardizing their eligibility for needs-based programs.
An ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account for individuals who developed a disability before age 26. Funds in the account:
- Can be used for expenses like housing, education, transportation, therapy, and employment support
- Grow tax-free
- Are not counted against SSI’s $2,000 asset limit (up to $100,000 is excluded!)
- Do not interfere with Medicaid or other benefits
North Carolina offers its own ABLE program, called NC ABLE, with easy online access and tools to help families manage funds.
Benefits of NC ABLE include:
- A $25 minimum deposit to get started
- No impact on eligibility for SSI (up to $100,000) or Medicaid
- Prepaid debit card access for everyday expenses
- Online management and contributions from family and friends
- Option to roll over up to $17,000/year from 529 college savings accounts
Whether you're thinking about your child’s long-term needs or helping a young adult with Fragile X build financial independence, NC ABLE can be part of the plan. Families use ABLE accounts to:
- Save for housing, therapies, or adaptive technology
- Set aside earnings from part-time work without affecting benefits
- Offer more control and dignity in how funds are spent
NC ABLE has a helpful team and online resources for enrollment and account setup. You can also talk with a special needs financial planner or reach out to us at the North Carolina Fragile X Foundation for community insights.
Questions? Contact NC ABLE at nc.able@nc.gov or call 888-609-8915
Reminder: The individual with the disability is the account owner, but family members can contribute. You can open an account online in just minutes.
Inclusion Works: North Carolina’s New Plan for a More Inclusive Future
Learn how North Carolina is working towards a more inclusive future and integrated employment for the state’s disability community through DHHS’s Strategic Plan.
The North Carolina Department of Health and Human Services (DHHS) has launched a powerful new initiative: the Inclusion Works Strategic Plan, a multi-year roadmap to advance inclusion and equity for people with disabilities across all areas of life.
This plan reflects the belief that inclusion is more than access-it’s about belonging, opportunity, and the ability to live a self-directed life in the community. That vision aligns deeply with the values of the Fragile X community.
DHHS has outlined four interconnected focus areas – or “pillars” – to guide its work:
- Inclusive Communities
• Promote accessible housing, transportation, and public spaces
• Strengthen community inclusion and natural supports
• Support social and civic engagement opportunities - Inclusive Services
• Ensure Medicaid and behavioral health services are person-centered and community-based
• Expand access to home- and community-based services (HCBS), including Innovations Waiver supports
• Improve service navigation and reduce silos across systems - Inclusive Workforce
• Increase employment opportunities for people with disabilities, especially in competitive integrated employment (CIE)
• Strengthen collaboration among schools, Vocational Rehabilitation, Medicaid, and employers
• Develop inclusive hiring practices within government and encourage them in the private sector - Inclusive Systems
• Embed disability inclusion in state policies, data collection, and accountability efforts
• Elevate voices of people with lived experience in shaping policy and program decisions
• Advance equity and address disparities faced by people with disabilities
The Inclusion Works plan makes employment a central focus of North Carolina’s disability inclusion strategy. It calls for:
- Expanding access to supported and competitive integrated employment
- Improving transition services for students moving from high school to work
- Tracking employment outcomes across programs
- Strengthening the Direct Support Professional (DSP) workforce to support employment success
This is good news for Fragile X families seeking meaningful opportunities for their children to work, build skills, and engage in community life. Families affected by Fragile X often rely on Medicaid waivers, early intervention, special education, and job coaching. The Inclusion Works plan promises:
- Better coordination across systems
- A focus on inclusion from early childhood through adulthood
- Recognition of family voices and lived experience in shaping services
- Renewed attention to workforce challenges that disrupt care and opportunities
If your loved one with Fragile X receives Supplemental Security Income (SSI), they can work and still maintain their benefits. SSI has special rules that allow individuals with disabilities to earn income, especially when using supported employment services and reporting income properly. Work is possible. Work is encouraged. And work builds purpose, pride, and community.
We encourage families to explore community-based employment services such as:
- Vocational Rehabilitation (now known as Employment and Independence for People with Disabilities - EIPD) – available in every NC county
- Supported Employment through the Innovations Waiver
- School transition planning and Pre-ETS services
- Job coaching and employment specialists at your local LME/MCO
Contact Employment and Independence for People with Disabilities:
https://www.ncdhhs.gov/eipd
You can also reach out to the North Carolina Fragile X Foundation at
info@ncfragilex.org — we’ll help connect you with the right supports in your area.
Have feedback on the Inclusion Works plan?
DHHS is asking for public input. Share your thoughts or story here:
https://www.ncdhhs.gov/about/department-initiatives/inclusion-works
Let’s show up and show our state that Inclusion Works best when our Fragile X Community families are involved, voices are heard, and everyone belongs.
Let’s show up and show our state that Inclusion Works best when our Fragile X Community families are involved, voices are heard, and everyone belongs.
ADVOCATE . . .
You can influence the state’s five year plan that sets priorities and steers funding for programs and services for the developmental disabilities across NC. In addition, you can learn about proposed federal budget cuts and how they will affect our disability community With what you learn, you can contact your Congressional Representatives and Senators and explain how those programs are vital to our disability community.
Influence NCCDD’s 5 Year Plan
The North Carolina Council on Developmental Disabilities (NCCDD) is finalizing its 2027–2031 Five Year State Plan, which steers funding and priorities for developmental disabilities across NC. Your experiences with Medicaid, education, employment, respite care, advocacy and community inclusion and more are essential.
- Visit the survey page: https://nccdd.org/the-council/five-year-plan
- Complete the English or Spanish version online (PDF/Word also available)
- Submit your input before September 30, 2025
Take Action today! Let North Carolina leaders know why Fragile X families must be at the center of solutions.
The North Carolina Council on Developmental Disabilities (NCCDD) wants to hear your personal story – why life with Fragile X matters, and what support makes a difference.
How to Share:
- Go to: https://nccdd.org/initiatives/my-story-matters
- Complete the form, upload a photo, and give permission to share your story publicly
Storytelling Tips: Make Your Voice Count
- Pick a focus: progress in therapies, challenges at school, navigating Medicaid, community inclusion, employment
- Be specific: describe a moment—a therapy breakthrough, an obstacle overcome, a moment of joy
- Share feelings: what gave you hope? What’s still hard?
- Highlight impact: how did an advocate, service, or accommodation change things?
- Convey your vision: what changes do you want to see for Fragile X families in NC?
- Keep it clear and personal: one compelling story is more powerful than general statements
Encourage siblings, caregivers, and self-advocates to participate too!
Why Your Voice Matters
- Policymakers need real Fragile X experiences to make informed decisions
- Your story shapes future funding, services, and quality of life supports
- Personal narratives build empathy and public awareness—moving systems toward change
Federal Budget Proposal for FY 2026 Puts Disability
& Education Programs at Risk
The proposed federal budget for Fiscal Year 2026 includes significant cuts and restructurings that could directly affect both disability programs and educational supports – especially for children and adults with intellectual disabilities.
While the Administration for Community Living (ACL) – soon to be folded into the new Administration for Children, Families, and Communities (ACFC) – will still oversee aging and disability services, the budget proposes eliminating long-standing programs vital to our community:
- University Centers for Excellence in Developmental Disabilities (UCEDDs)
- Projects of National Significance
- Limb Loss and Paralysis Resource Centers
- Voting Access for People with Disabilities
- Chronic Disease Self-Management Education Program
It also includes deep cuts to other programs:
- Falls Prevention
- Title VI Native American Elders Program
- Alzheimer’s Programs
- Developmental Disabilities Councils
- National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)
Some areas, like Elder Rights and Independent Living grants, see proposed increases – but those increases may be redirected by states to offset the elimination of other critical disability services.
You can view the full federal budget document here:
https://www.hhs.gov/sites/default/files/fy-2026-acfc-cj.pdf
(ACFC structure begins on page 5)
(Proposed eliminations and changes begin on page 14)
(Detailed program justifications start around page 25)
The FY 2026 federal budget also proposes major shifts in education policy and funding, directly impacting students with disabilities:
- IDEA Part B (Special Education Grants to States): Proposed increase to $14.9 billion, or approximately $1,944 per student with a disability.
- Consolidation of IDEA Part D Programs: Five targeted programs (including Parent Centers, Personnel Prep, and Assistive Technology) would be folded into Part B, eliminating over $700 million in dedicated funding lines.
- Early Intervention (IDEA Part C): Funding remains flat at $540 million—a cut in real terms as demand continues to grow.
- New “Simplified Funding” Block Grant Model: Consolidates multiple special education programs into one grant, giving states more flexibility but less accountability.
- Broader Department of Education Cuts: A proposed 15% reduction (about $12 billion) could affect programs like school-based mental health, Medicaid reimbursements, Title I, and public-school infrastructure.
According to The Arc of North Carolina, these changes threaten access to school-based services, specialized instruction, and early developmental supports for students with disabilities.
- Loss of Specialized Education Supports: Parent centers, staff training, and assistive technology programs that support students with Fragile X may be eliminated or underfunded.
- Stalled Early Intervention: Flat funding for Part C could reduce access to therapies and early developmental services for toddlers.
- Fewer School-Based Services: Cuts to IDEA Part D and Department of Education programs could lead to reductions in speech, OT, behavioral supports, and classroom aides.
- Uneven Support Across States: Block grants would let each state set its own priorities, leading to more variation in how students with disabilities are supported.
The federal budget process is underway, and decisions being made in Washington could have a direct impact on Fragile X families - especially through potential cuts to Medicaid and education. A letter or a call can make the difference!
- Find Your Members of Congress - Visit www.congress.gov/members and enter your full address to identify your U.S. Senators and Representative. You’ll find their contact information and links to their official websites.
- Call or Email Their Offices - Use their contact form, email address, or call their Washington, D.C. or local office. Always include your name and home address so they know you're a constituent. Ask to speak with the staff member who handles education, healthcare or disability issues. Written letters sent in the US mail will take several weeks to reach your member of Congress due to security concerns. Use e-mail or phone calls!
- Share Your Story - Keep it short and focused. Use these questions to guide your message:
a. Why is Medicaid important to your family or loved one?
b. What services do you currently receive through Medicaid?
c. If your child is still in school, what special education services is your child receiving?
d. How would proposed budget cuts impact your daily life?
Your personal experience carries more weight than you might think. When members of Congress hear directly from Fragile X families like ours, it makes a difference. Our stories matter - and this is an important time to share them.
NC Fragile X Foundation News: Board Elections
At the June 14 board meeting of the North Carolina Fragile X Foundation, the Board of Directors elected officers for the 2025–2027 term and welcomed a passionate new member to the team.
Welcome, Brittney Tillman!
“We’re thrilled to officially welcome Brittney Tillman to the NCFXF Board. Brittney is a dedicated advocate and early childhood special educator who brings both lived experience and professional experience to the board,” NC Fragile X Foundation President Steve Strom said. “Brittney has been active in the Fragile X community over the years and brings a family-centered perspective to the work of inclusion and support. We’re grateful to have her voice and leadership on the board!”
The board also elected two key officers. Allison Taylor was elected Secretary through 2027 and Diane Upshaw was re-elected as Treasurer for a second two-year term. Diane oversees our finances, including budgets, accounts, and annual filings to maintain our nonprofit status. We are grateful to both Allison and Diane for serving in these critical roles and helping guide our work across the state.
The board thanks Renée Clark for her dedicated service as secretary and looks forward to her continued leadership in the Foundation.
Join us for Sip & Chat Zoom Calls!
Join us for Sip & Chat Zoom Calls!Zoom calls are held from 7-8 PM on the 3rd Wednesday of every month. Connect with other Fragile X families to discuss topics of interest. After registering, you will receive a confirmation email about joining the meeting. Click here to register.
Upcoming 2025 Dates:
- July 16
- August 20
- September 17
- October 15
- November 19
- December 17