UPCOMING EVENTS
Wed, Nov 19
7-8 PM
Sip & Chat
Saturday, December 6, 9:00 AM to Noon
Foundation Board Meeting
Wed, Dec 17
7-8 PM
Sip & Chat
Families, Fun, and Friendship Shine at the 2025 Fragile X Family Picnic
The North Carolina Fragile X Foundation hosted its annual Family Picnic on Saturday, October 11, at Lake Mackintosh Park in Burlington, and it was a day filled with sunshine, laughter, and community. With beautiful fall weather and more than 80 attendees, families enjoyed a day of connection, relaxation, and friendly competition.
A Day Planned with Heart
A big thank-you goes to Tim Field, who once again served as Picnic Chair along with his family members Phineas and Nico. His outstanding organization and trademark sense of fun made the day run smoothly from start to finish. Tim’s leadership and creativity have made this event a highlight for many Fragile X families year after year.
Families were welcomed by a lineup of community partners and vendors eager to share valuable resources. Representatives from Trillium Health Resources, Alliance Health, the Exceptional Children’s Assistance Center (ECAC), the Carolina Institute for Developmental Disabilities Participant Registry Team, the North Carolina Council on Developmental Disabilities, and Voices Together were all on hand to meet families and answer questions. Voices Together also generously provided a gift basket for a raffle drawing, which brought big smiles to the crowd.
Food, Games and Laughter
No North Carolina gathering would be complete without great food! Guests enjoyed a delicious lunch of authentic North Carolina barbecue and Chick-fil-A meals for the kids (and a few adults who couldn’t resist).
The afternoon was packed with outdoor fun – cornhole, giant Jenga, and giant Connect Four kept everyone laughing between bites. The highlight of the day came during the Field Games, when everyone from age 8 to 80 joined in friendly competition. Participants were divided into four teams representing different regions of our state, NC Possums, Mountain Goats, Turtles, and Buccaneer. These four teams faced off in the javelin throw, egg races, water balloon toss, and three-legged races, all cheered on by spectators with a healthy dose of team spirit and laughter.
Bingo and Big Smiles
For those looking for a little more action after the field games, everyone gathered back at the clubhouse for an exciting round of Bingo – a new addition to the picnic this year! Board member Brittney Tillman served as the Bingo caller, keeping the energy high and the games moving with her warmth, humor, and enthusiasm. It was the perfect way to end the afternoon – with smiles, prizes, and plenty of laughter echoing through the clubhouse.
Capturing the Day
A heartfelt thank you also goes to our photographers, Dr. Gail Spiridigliozzi and Hannah Johnson, for beautifully capturing the joy and togetherness of the day. Their photos will help us relive these special moments for years to come. Click here to view all the photos.
Community, Connection and Celebration
Beyond the food and fun, the day represented what makes the Fragile X community so special – belonging, inclusion, and shared understanding. Parents connected with others who truly understand the Fragile X journey, while children and adults alike made new friends and celebrated old ones.
The North Carolina Fragile X Foundation extends heartfelt thanks to all the families, volunteers, and vendors who made this day possible and especially to Tim Field for his continued leadership and countless hours of giving back to this community. It was a day filled with laughter, learning, and love reminding us all that our community grows stronger each time we come together.
October is the 80th National Disability Employment Awareness Month:
Expanding Possibility Through Real Work and Real Inclusion
Each October, National Disability Employment Awareness Month (NDEAM) celebrates the contributions of workers with disabilities and promotes inclusive employment policies and practices. This year’s national theme – “Celebrating Value and Talent” – reminds us that employment is not a privilege or charity. It’s an expectation and a right.
In North Carolina, we’re seeing growing momentum toward inclusive, supported employment – from small businesses to statewide programs – and it’s changing lives.
Creating Opportunities That Work: The Story of Whirlidogs Café
In Wilson, North Carolina, Whirlidogs Café opened its doors in May 2024 with a simple but powerful mission: to create meaningful job opportunities for young adults with intellectual and developmental disabilities. Among its first employees was Malachi, a 17-year-old with Fragile X Syndrome who was eager to learn and ready to work.
At Whirlidogs, Malachi quickly found his rhythm – learning the tasks of customer service, teamwork, and food preparation. But most importantly, he discovered that work could be a space for growth, confidence, and connection.
Malachi’s family describes the transformation not as a sudden breakthrough but as steady progress. Over time, the quiet self-doubt of “I can’t” began to shift toward “I can do hard things.” That mindset – built through real-world experience, supportive coaching, and community inclusion – is what meaningful employment can do.
Whirlidogs Café shows what’s possible when workplaces focus on ability, not limitation. It’s not a story about “special” jobs; it’s about building workplaces that welcome everyone and recognize the value people with disabilities bring to the team.
Across North Carolina, families often wonder whether their son or daughter could ever hold a job. The truth is – with the right supports – many can. Opportunities exist today that didn’t a decade ago.
The Division of Vocational Rehabilitation Services (now called the Division of Employment and Independence for Persons with Disabilities) helps people with disabilities prepare for, find, and keep jobs in the community. Families can learn more and start the process at:
For individuals receiving services through the Innovations Waiver or 1915(i) programs, Supported Employment services are also available. These services provide one-on-one assistance to help people identify interests, build job skills, and receive ongoing job coaching – ensuring success not just in getting a job, but in keeping it.
The message of National Disability Employment Awareness Month is simple: everyone who wants to work should have the opportunity to do so. When we change our expectations, connect with the right supports, and advocate for inclusive workplaces, we make North Carolina stronger — one job at a time.
As Malachi’s experience at Whirlidogs Café reminds us, meaningful work is not about inspiration. It’s about inclusion, contribution, and belonging — the cornerstones of an equitable community.
Learn more: https://www.whirlidogs.com
NC Fragile X Advocates Celebrate NDEAM in Raleigh
Steve Strom, NC Fragile X Foundation, was at the Governor’s Mansion on Friday, October 10 celebrating Governor Josh Stein’s proclamation of the National Disability Employment Awareness Month.
North Carolina Medicaid Faces Cuts Amid Budget Shortfall
Families urged to stay informed and speak up as funding gap threatens critical services
The North Carolina Department of Health and Human Services (NCDHHS) has announced reductions in Medicaid reimbursement rates and warned of possible service reductions following a significant state budget shortfall caused by the General Assembly’s failure to fully fund the Medicaid program for the current fiscal year.
In August, NCDHHS Secretary Dr. Dev Sangvai announced that the legislature’s stopgap spending plan left a $319 million gap in Medicaid’s base budget. To continue operating the program statewide, NCDHHS began implementing a series of cost-containment measures effective October 1, 2025.
These include:
- Rate reductions of 3% for most Medicaid-funded services, including the Innovations Waiver, 1915(i), and TBI Waiver.
- Larger reductions (up to 10%) for certain residential and institutional settings such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) and Psychiatric Residential Treatment Facilities (PRTFs).
- Ongoing review of “optional” services – those not federally required – for possible future cuts.
These cuts will affect families across North Carolina in multiple ways.
- For individuals receiving services: Providers may face financial strain, leading to staff shortages, reduced service hours, or longer wait times for therapies and community supports.
- For individuals living in group homes or ICF/IID settings: Facilities are bracing for significant budget impacts that could affect staffing levels and quality of care.
- For individuals approved for 1915(i) services: Although 1915(i) is not slot-based, it depends entirely on the availability of direct support professionals. Rate reductions will make it even harder for agencies to recruit and retain qualified staff, creating real barriers to service delivery even when eligibility is established.
- For families waiting for Innovations Waiver services at home: The funding gap could delay new allocations and slow progress toward reducing the waitlist, leaving many families without consistent support.
These changes are not the result of any federal action. They stem entirely from state-level funding shortfalls. The North Carolina General Assembly has not yet passed a full state budget, leaving NCDHHS without sufficient funds to sustain the Medicaid program at current levels. Without legislative action, rate reductions and service impacts are expected to continue into 2026.
- Stay informed and document any changes
If your family member’s services are reduced, delayed, or interrupted, keep written notes. Record the date, provider, and impact. This documentation helps advocacy groups – including ours – share real examples with policymakers. - Contact your legislators
Let them know how Medicaid supports your loved one and what these cuts mean for your family. Use your voice – these are state-level decisions, and lawmakers need to hear directly from constituents.
Find your NC House and Senate members here:
https://www.ncleg.gov/FindYourLegislators - Stay connected to your team
Check in regularly with your LME/MCO, Tailored Plan, and – if you’re receiving services – your service provider. Ask whether rates, staffing, or service schedules are being affected. They can guide you on temporary changes, appeals, or additional supports. - Report issues and seek help.
If you experience service loss, contact the NC Medicaid Ombudsman at https://ncmedicaidombudsman.org or call 877-201-3750. The Ombudsman can help resolve access problems and ensure your voice is heard. - Join collective advocacy.
Organizations such as the North Carolina Fragile X Foundation, the Self Direction Coalition of NC, the North Carolina Council on Developmental Disabilities, The Arc of North Carolina, and the Autism Society of North Carolina are monitoring these developments and advocating for restored funding. Add your voice, share your story, and help us demonstrate that cuts to disability services are cuts to community inclusion.
- NCDHHS Statement: Secretary Dev Sangvai on the NCGA Spending Plan
- North Carolina Health News: Medicaid Cuts Squeeze Providers
- NC Justice Center: NCGA Urged to Act as Cuts Take Effect
Five Plus 1 Things to Remember This Holiday Season When Your Loved One Has Fragile X Syndrome
A guide for families from the North Carolina Fragile X Foundation
The holidays bring opportunities for joy, connection, and celebration—but for individuals with Fragile X Syndrome (FXS), they can also bring stress. Unfamiliar environments, travel, sensory overload, and disrupted routines can make family gatherings challenging. With planning and compassion – for your loved one and yourself – you can create a season that prioritizes comfort, inclusion, and peace.
Five Things to Remember
- Use a visual schedule or short story to show what will happen (“First we travel, then we visit Grandma’s, then we go home”).
- Share event details ahead of time – where, who, when, how long – and communicate any changes clearly.
- Encourage predictability by rehearsing transitions like greeting relatives or sitting at the table.
- Choose a quiet retreat spot for downtime or recovery.
- Bring calming tools—noise-reducing headphones, fidgets, sunglasses, or familiar snacks.
- Schedule sensory breaks and give permission for your loved one to step away when overwhelmed.
- Recognize early signs of stress (covering ears, pacing, verbal tension).
- Use “first-then” strategies: “First we say hello for five minutes, then you can take a break.”
- Have an exit plan that’s calm and predictable – leave on a positive note if needed.
- Share a short “how to help” note with hosts or family members so they understand your loved one’s needs.
- Ask a trusted friend, family member, or provider to be a backup helper at gatherings.
- Stay in touch with community supports – other Fragile X families, peer mentors, or local organizations who understand.
- Try to preserve bedtime, meals, and comfort rituals when possible.
- Use countdowns and reminders for transitions (“We’ll leave in ten minutes”).
- Plan a favorite “end-of-day” activity to close on success and reassurance.
Holidays can amplify stress, guilt, or comparison for caregivers. Remember – your role is already demanding, and you deserve compassion, too.
- Redefine “success.” A calm morning or a few shared smiles can matter more than a perfect day.
- Set boundaries. It’s okay to say no to events or traditions that create more stress than joy.
- Ask for help. Enlist family to take shifts, handle travel details, or manage meals so you can focus on your loved one.
- Plan rest. Build recovery time before and after major gatherings – quiet evenings, walks, or connecting with another caregiver.
- Let go of guilt. If things don’t go smoothly, it doesn’t mean you failed. Every family’s version of “holiday joy” looks different.
Taking care of yourself makes you stronger and steadier for the people you love most.
- Prepare a “holiday sensory kit”: headphones, favorite toy, comfort item, water, snacks.
- Print a one-page “About Me” sheet for hosts: sensory preferences, communication tips, calming strategies.
- Make travel visual – photos or short videos of places you’ll visit.
- Keep expectations flexible: celebrate progress, not perfection.
Further Resources
- National Fragile X Foundation: Practical tools, handouts, and family checklists.
https://fragilex.org/resources/ - Fragile X 101: Understanding behaviors, anxiety, and sensory needs.
https://fragilex.org/understanding-fragile-x/fragile-x-101/ - CDC Fragile X Resources: Educational and communication tools for families.
https://www.cdc.gov/fragile-x-syndrome/communication-resources/index.html
Join us for Sip & Chat Zoom Calls!
Zoom calls are held from 7-8 PM on the 3rd Wednesday of every month. Upcoming 2025 dates are November 19 and December 17. 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.