UPCOMING EVENTS
Wed, Aug 20
7-8 PM
Sip & Chat
Wed, Sept 17
7-8 PM
Sip & Chat
Saturday, September 13, 9:00 AM to Noon
Foundation Board Meeting
September 30, 2025
Deadline to take NCCDD 5 Year Plan Survey
Saturday, October 11
11 AM to 4 PM
Fragile X Family Picnic
Medicaid Turns 60: A Lifeline for Families Living with Fragile X
On July 30, 1965, President Lyndon B. Johnson signed the legislation that created Medicaid – a health insurance program for people with limited income. Sixty years later, Medicaid remains a lifeline for millions of Americans, including families here in North Carolina raising children and adults living with Fragile X Syndrome.
Medicaid helps pay for essential services like therapies, assistive technology, and long-term supports for daily living. Many of our families rely on North Carolina’s Innovations Waiver, 1915(i) services, and Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) to ensure our loved ones have the support they need to live and thrive in their communities.
This milestone comes at a critical time, with important budget decisions underway in both Washington and Raleigh that could impact Medicaid's future. As we celebrate 60 years of this vital program, we urge families and allies to stay informed and engaged. Your voice matters.
The Federal Budget Bill Has Been Signed.
What now?
On July 4, 2025, Congress passed the One Big Beautiful Bill Act (OBBBA), a sweeping federal budget law that makes deep, long-term cuts to Medicaid – totaling more than $1 trillion over the next decade. These cuts will reshape Medicaid eligibility, coverage, and funding in ways that could directly affect those with Fragile X syndrome, including new eligibility requirements, more frequent paperwork, and reduced financial protections for families. While these changes are now federal law, how they will impact North Carolina families is still uncertain – because the North Carolina General Assembly has not yet passed a state budget. That budget will determine whether and how the state responds to these cuts. Federal funding for Fragile X research through the NIH, CDC, and DOD may also be reduced. These programs have been essential to advancing new treatments, early diagnosis, and public health tracking that have benefits to other genetically linked disabilities beyond Fragile X.
- Mandatory 80-hour-per-month work requirements for many adults, starting in late 2026
- Twice-yearly eligibility redeterminations, increasing the risk of losing coverage
- Reduced retroactive coverage windows, creating financial risk for families facing medical emergencies
- Provider tax limits and reimbursement restrictions phased in through 2034
These changes could lead to fewer people being covered, disruptions in care, and greater administrative burdens for families. However, how these cuts affect your family will depend in part on decisions still to be made here in North Carolina.
OBBBA is now federal law. Cuts to Medicaid are happening.
North Carolina has not yet passed a state budget. That means we don’t yet know whether state lawmakers will allocate funds to soften the blow of federal cuts. For example:
- Will North Carolina provide funding to offset loss of federal Medicaid dollars?
- Will North Carolina ask for waivers to these rules that delay, modify or speed up implementation of certain eligibility restrictions?
- Will essential services like long-term supports, therapies, and health care access be preserved – or reduced?
Previously, we shared that North Carolina had not yet passed a state budget for the new fiscal year. That has now changed. On August 8, Governor Josh Stein signed a stopgap spending plan, commonly called a “mini budget,” passed by the General Assembly. While a more comprehensive budget bill is expected later this session, this interim measure sets some immediate funding levels for Medicaid.
The mini budget includes $600 million for the Medicaid rebase and the Medicaid Oversight Fund. However, according to the North Carolina Department of Health and Human Services (NCDHHS), this still leaves a $319 million shortfall in the Medicaid rebase — the funding required to maintain current service levels statewide.
In a statement, NCDHHS Secretary Dev Sangvai explained that without full rebase funding, the department will have to consider reducing optional services and/or lowering provider rates. He warned that “underfunding NC Medicaid now after years of building a nationally recognized program… is a serious setback” and that these cuts “threaten care for those who need it most, including some of North Carolina’s most vulnerable populations.”
For Fragile X families, this shortfall could have direct consequences. Optional Medicaid services and provider payment rates impact access to therapies, home- and community-based services, and long-term supports that individuals with Fragile X depend on to remain at home and engaged in their communities. The loss of initiatives like the Healthy Opportunities Pilots could also limit access to housing, nutrition, and transportation supports that improve quality of life.
What’s Next
We will continue to monitor both the federal budget process and North Carolina’s comprehensive budget negotiations. Together, these decisions will determine the scope of Medicaid services and disability supports in the coming year.
Fragile X families should stay informed and engaged as these discussions move forward – the budget decisions made now will directly shape the resources available to support our loved ones.
Stay informed! The situation is evolving, and much depends on how North Carolina responds in its upcoming state budget.
We encourage you to keep opening our emails and checking our updates and those of our trusted partners. We will share specific calls to action when they are most needed – once the NC General Assembly begins finalizing its funding decisions.
Your awareness and engagement will help us protect what matters most: access to care and services for our loved ones with Fragile X.
Representation Matters:
A New Quarter Honors Disability Justice on the Heels of Fragile X Awareness Day
As we reflected on Fragile X Awareness Day on July 22, families across North Carolina came together to celebrate the strength, joy, and resilience of individuals living with Fragile X Syndrome. This year’s observance carries even more significance as our nation prepares to honor a disability rights leader with deep North Carolina roots on one of its most iconic symbols.
On August 12, the U.S. Mint will release a new quarter featuring Stacey Park Milbern, a visionary disability justice activist. Born in Seoul, South Korea, Stacey was raised at Fort Bragg, North Carolina, where her father was stationed in the U.S. Army. It was in North Carolina that Stacey began her lifelong commitment to disability advocacy – helping to establish the North Carolina Youth Leadership Forum, serving on the Statewide Independent Living Council and the Commission for the Blind, and playing a key role in the passage of a 2007 law requiring disability history education in public schools.
Stacey, who lived with congenital muscular dystrophy, later moved to the Bay Area to live independently and expand her advocacy. She became a national leader in the Disability Justice movement, serving on the President’s Committee for People with Intellectual Disabilities and championing health equity for those from historically marginalized communities. She passed away in 2020 at just 33 years old, but her legacy continues to inspire.
The decision to feature Stacey on a U.S. quarter, part of the American Women Quarters Program, is groundbreaking. It marks a rare instance of authentic disability representation on national currency, and a powerful affirmation that people with disabilities belong in every part of public life – not just as recipients of services, but as leaders, educators, and changemakers.
For our Fragile X community, this moment resonates deeply. Every person with Fragile X deserves to grow up in a world that sees their value and potential. Representation like Stacey’s reminds us of what’s possible when we create a more inclusive society – one where disability is not hidden or pitied, but recognized and celebrated as part of the rich fabric of American life.
As we honor Fragile X Awareness Day and this historic moment in disability representation, let’s carry forward Stacey’s vision. Educate, advocate, and amplify the voices of those too often left out of the picture. A quarter may be small, but the message it sends is monumental.
Fragile X Tool Time Tuesday: Spotlight on Awareness and Action
In honor of Fragile X Awareness Month, the Exceptional Children’s Assistance Center (ECAC) invited the North Carolina Fragile X Foundation to lead a special Tool Time Tuesday webinar on July 15. This focused, 30-minute session was presented by Steve Strom, President of the NC Fragile X Foundation, and Kerry McCarthy Adams, a fellow parent, advocate, and host of our monthly Sip and Chat virtual support group for Fragile X families.
Watch the recording here:
Tool Time Tuesday: July is Fragile X Awareness Month
The webinar provided a concise overview of Fragile X Syndrome, including early signs, behavioral characteristics, and the importance of genetic testing. The duo shared
North Carolina-specific resources for families navigating early intervention, IEPs, EPSDT, LME/MCO services, and Medicaid waiver supports.
ECAC’s Tool Time Tuesday series is designed to provide short, practical webinars for families of children with disabilities.
A Legacy of Giving:
Knights of Columbus and LAMB Foundation Continue Support with $10,000 Gift to NCFXF
On Saturday, June 14, the North Carolina Fragile X Foundation was honored to receive a $10,000 donation from the Knights of Columbus and the LAMB Foundation of North Carolina. The check was presented by LAMB Foundation Director John Gouldie to the NCFXF Board of Directors, marking a continuation of faithful support that dates back to 1989.
This extraordinary gift will directly support NCFXF’s mission to raise awareness, provide support to families, and advocate for improved services for individuals living with Fragile X Syndrome and related conditions. Funds will help expand outreach efforts, increase access to educational programming, and support events like our annual Bowlathon and Fragile X Awareness Month activities. These efforts ensure that families across North Carolina have the resources, connections, and voice they need to thrive.
The LAMB Foundation – named for its motto “Least Among My Brethren” – is the charitable arm of the North Carolina Knights of Columbus, a Catholic fraternal organization known for its commitment to service, family, and faith. Through thousands of volunteer hours and donations collected outside local stores, Knights across the state raise and distribute hundreds of thousands of dollars annually to support children and adults with intellectual and developmental disabilities.
North Carolina’s local councils have been steadfast champions for our cause for more than three decades. From Raleigh to Charlotte and from Boone to Wilmington, Knights of Columbus members have built deep partnerships with local nonprofits, schools, and families. Their support of NCFXF reflects a shared belief that every person deserves dignity, opportunity, and community.
“We are profoundly grateful for this generous gift and the decades-long partnership it represents,” said Dr. Ave Lachiewicz, one of the founding board members of NCFXF. “Together with the Knights of Columbus and the LAMB Foundation, we will continue to build a more inclusive North Carolina – one where individuals with Fragile X and their families are understood, supported, and empowered.”
Share Your Voice: Fragile X Families Invited to Participate in New Research Study
Caroline DeVane, a PhD student and North Carolina native, is conducting a groundbreaking research study through the University of Massachusetts Amherst that centers the voices and experiences of families impacted by Fragile X Syndrome (FXS) and related conditions. As a member of the Fragile X community herself, Caroline is reaching out to fellow caregivers and parents across the region to participate in a study designed to highlight the resilience, strengths, and stories of families like yours.
The study welcomes parents or primary caregivers (ages 18+) of individuals – children or adults – who are:
- Living with Fragile X Syndrome (FXS),
- Carriers of the Fragile X gene, or
- Diagnosed with Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS).
Participation involves a series of three virtual focus group sessions, with an optional fourth session held in person. Travel costs for the in-person meeting will be fully covered. Participants will also have the opportunity to share more deeply through optional individual interviews conducted remotely.
This is a chance for families to help shape research from a strengths-based perspective, grounded in lived experience.
Your voice matters, and your insights can help expand understanding and support for the entire Fragile X community.
To learn more or sign up, contact Caroline DeVane at cdevane@umass.edu or 773-710-1878.
Bowl-a-Thon 2025: Strikes, Smiles & Support!
The North Carolina Fragile X Foundation's Bowlathon on Sunday, July 22 at Rainbow Lanes in Clayton was a striking success! Over 100 bowlers and spectators gathered for an afternoon of fun, friendship, and fundraising – and together, we raised $6,000 to support families affected by Fragile X Syndrome across our state.
The event was generously sponsored by Harmony Biosciences, whose support made possible our signature event t-shirts – each bowler received one proudly bearing the NC Fragile X logo on the front and Harmony's logo on the back.
Thanks to the incredible talents of Jennifer Keith and her family, Rainbow Lanes was transformed with beautiful balloon centerpieces, a dazzling balloon wall, and delicious cakes and refreshments that brought joy to everyone in the building.
Our 50/50 raffle raised $600 – and in a heartwarming twist, self-advocate Adam Strom won the raffle and donated his $300 prize back to the Foundation. Thank you to Len and Renée Clark for volunteering to sell raffle tickets throughout the event.
Alex Macpherson took home the bowling trophy with the day's top score – and plenty of applause!
Most of all, we're thankful for every bowler, spectator, volunteer, and supporter who made the day a joyful celebration of community and connection. Your participation brings us closer to a world that fully supports and includes individuals living with Fragile X.
We’re already looking forward to next year!
Register Now! Annual 2025 Fragile X Picnic Returns Saturday, October 11 (opens in new tab)
The NC Fragile X Foundation Board is pleased to host our annual Family & Friends Picnic. We look forward to seeing familiar and new faces!
Saturday, October 11, 2025, 11:00 AM to 4:00 PM
Rain or Shine! Lake Mackintosh Park Club House
2704 Huffman Mill Road, Burlington, NC 27215
Join us for a day to reunite and gather with our NC Fragile X community! Tim Field and his team will be back with another fun-filled celebration for all.
WHAT TO EXPECT:
- Catered BBQ Lunch (with Vegetarian and kid-friendly options)
- Scenic and Peaceful Location on the Lake
- Friendly Faces, both Familiar and New
- NCFXF Olympic Games!
Please share this information with friends, family, or community members who want to join in on the fun! Download the Picnic Flyer here.
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:
- August 20
- September 17
- October 15
- November 19
- December 17