Tues, July 7
(Date Update)
7-8 PM
Sip & Chat
Summer Speaker Series
Sun, July 12
2:00 to 5:00 PM
Xtraordinary Fragile X
Bowl-a-Thon
July 16-19
20th NFXF International
Fragile X Conference
Louisville, KY
Sun, July 22
World Fragile X
Awareness Day
Tues, Aug 11
7-8 PM
Sip & Chat
Summer Speaker Series
Sat, Sept 12
9 AM - Noon
Fragile X Foundation Board Meeting
JULY IS FRAGILE X AWARENESS MONTH!
Fragile X Community Reaching Out to All 100 Counties
A new effort emerged during a strategic planning session in February where the Foundation created its new theme: Fragile X: We’re Everywhere!
That led to further discussions on how we, as a community, can truly connect with individuals and families impacted by Fragile X across all 100 counties of North Carolina.
“We know Fragile X families live all across North Carolina but many families feel alone,” Brittney Miller, newly elected president of the NC Fragile X Foundation explained. “Our Fragile X community knows we are stronger when united together and that is why every county, every family, every Fragile X story matters.”
“We recognized the need to reach out to Fragile X families across the state and really connect with them as a true statewide community,” Brittney Miller said. “Today, we are making the theme a reality and hope to ensure no Fragile X family has to navigate the journey alone.”
With a host of Fragile X Awareness Month (July) activities, new and existing community members are learning about vital resources, services and support; engaging with professional therapists, clinicians, educators and providers; and building lasting friendships and connections through Sip & Chat and social activities.
NC Fragile X will be using community social media, local newspapers and its current members to reach out to Fragile X families in their area and across the state and get them connected to our community.
Today, we are making the Fragile X: We’re Everywhere! theme a reality and hope to ensure no Fragile X family has to navigate the journey alone.
Fragile X Awareness Day – July 22
Shining the Light on Fragile X
World Fragile X Awareness Day shines light on Fragile X Syndrome by illuminating monuments and landmarks around the world. Here in North Carolina, our community gathers with friends and family to celebrate loved ones who shine in the face of Fragile X at our annual bowl-a-thon and select buildings will be illuminated in traditional teal color including Carolina East Health System in New Bern and the Kimpton Cardinal Hotel and Truliant Tower in Winston-Salem.
Those looking for a meaningful way to recognize World Fragile X Awareness Day might consider a donation to support our North Carolina Fragile X Community at ncfragilex.org/donate/.
Register Now - 2026 Bowl-a-Thon - Sun, July 12
Strike Out Fragile X This July!
July is Fragile X Awareness Month, and we are excited to celebrate with one of our favorite traditions: the North Carolina Fragile X Bowl-a-Thon!
Sunday, July 12, 2026, 2:00 to 5:00 PM
Rainbow Lanes Family Fun Center
850 NC-42, Clayton, NC
Join us Sunday, July 12 for an afternoon of bowling, family fun, connection and support for the Fragile X community. Whether bowling for strikes, cheering from the sidelines, buying raffle tickets, or simply showing up to be part of the day, your presence makes a difference.
Our Bowl-a-Thon brings together families, friends, self-advocates, board members, and supporters from across North Carolina. It is more than a fundraiser. It is a chance for our community to gather, celebrate, and raise awareness during Fragile X Awareness Month.
- Registration and check-in will begin at 2:00 PM, followed by bowling from
3:00 - 4:00 PM. - Registered bowlers will enjoy two games of bowling and a free Bowl-a-Thon T-
shirt if registered by the deadline. We will also have our popular 50/50 raffle,
giving everyone a chance to win while supporting the work of the North Carolina
Fragile X Foundation. - After bowling, we will gather for snacks, drinks, and time together as the NC
Fragile X community.
There are many ways to support the Bowl-a-Thon:
- Register to bowl as an individual or with a team.
Invite family, friends, coworkers, neighbors, or church members to join you. - Create a fundraising page and share why Fragile X awareness matters to your
family. - Ask your employer if they offer donation matching.
- Buy 50/50 raffle tickets and help spread the word.
- Can’t attend in person? You can still support the event by making a donation or
sharing the fundraiser with others.
We are also seeking sponsors for this year’s Bowl-a-Thon. Sponsorships help us cover
event costs, expand outreach, and continue supporting Fragile X families across North
Carolina.
If your business, organization, or family is interested in sponsoring the event, please
reach out to the North Carolina Fragile X Foundation. We would love to talk with you
about ways to be part of this special day.
Let’s Bowl for Fragile X Awareness!
- Free T-shirts for registered bowlers who register by the deadline.
- 50/50 raffle.
- Snacks and drinks.
- Family fun.
- Community connection.
And most importantly, support for Fragile X families across North Carolina. We hope to see you at the lanes on Sunday, July 12!
Sip & Chat Series Zooms in Participants
With record setting numbers of participants, our Sip & Chat Summer Series provided helpful information about NC Medicaid, the Innovations Waiver, 1915i services, advocacy and supports available to individuals with disabilities and their families on June 9th.
Led by Lisa Nesbitt, Supervising Attorney, from Disability Rights North Carolina, participating Fragile X families were given practical information to help them better navigate the system when trying to make the best decisions for their loved ones.
Lisa shared information about how Disability Rights NC supports individuals with disabilities across the state. She also encouraged families to use the resources available on the Disability Rights NC website, including fact sheets and updates on disability rights, Medicaid, housing, education and other important topics.
One important follow-up Lisa shared after the session was information about reserved Innovations Waiver capacity for emergency needs. While emergency waiver slots are limited and difficult to access, families should still ask if they believe their loved one meets the criteria for an emergency Innovations Waiver. The criteria include individuals with intellectual and developmental disabilities (I/DD) who are facing significant, imminent risk of serious harm, the situation is documented by a professional and no other service system can meet the identified need. For example:
- The primary caregiver or support system can no longer provide support for exceptional behavioral, medical, or safety needs.
- A child’s disability-related needs create an imminent risk of being placed into custody of the county Department of Social Services.
- The individual needs protection from confirmed abuse, neglect, or exploitation as documented by the Department of Social Services.
Lisa also reminded families that if an emergency slot request is denied, families may have appeal rights unless the denial is because no emergency slots are available at that time.
We are grateful to Lisa for her time, expertise, and willingness to answer so many questions from Fragile X families. We also appreciate the ongoing advocacy work of Disability Rights NC and the support they provide to families across North Carolina.
Please join us for our upcoming summer sessions:
Zoom calls are held on the 2nd Tuesday of every month from 7-8 PM.
Please register in advance. After registering, you will receive a confirmation email with information about joining the meeting.
Sip & Chat Summer Series Continues!
Tuesday, July 7, 7:00 PM (Date updated from July 14)
Guest Speaker: Dr. David Tillman, Chair of the Public Health Program at Campbell University and NCFXF Board Member
Topic: Puberty and Sex in the I/DD Community
Tuesday, August 11, 7:00 PM
Guest Speaker: Melissa Hazen, Exceptional Children Program Specialist
Topic: IEPs, different graduation routes, and transitions
Sip & Chat welcomes Fragile X families to connect, learn, ask questions, and support one another. Whether new to our community or long standing family, we invite you to join our hosts Brittney and Tom Miller to ask questions and get insights from these knowledgeable professionals. Everyone is welcome!
Have an idea for a future topic or speaker? Email Brittney Miller
Thank You to the Knights of Columbus LAMB Foundation
The North Carolina Fragile X Foundation is deeply grateful to the Knights of Columbus LAMB Foundation for its generous gift of $7,600 in support of our work with Fragile X families across North Carolina.
John Gouldie joined us to present the check at our June board meeting and tell us more about the LAMB (Least Among My Brethren) Foundation. The foundation has a long tradition of supporting organizations that serve individuals with intellectual and developmental disabilities through the Knights of Columbus councils across North Carolina. Their commitment is to raise funds each year to support programs and organizations that make a meaningful difference in the lives of people with disabilities and their families.
The LAMB Foundation’s support of the North Carolina Fragile X Foundation helps strengthen our mission of connecting and supporting families across North Carolina. For many families, finding another person who understands Fragile X can be life changing. It can mean finding trusted information, a listening ear, an opportunity to connect, or a community that reminds them they are not alone.
We are honored and thankful for the generous support of the Knights of Columbus LAMB Foundation and grateful to John Gouldie for joining us to mark this special moment.
Board Leadership Update and a Warm Welcome to New Faces
The North Carolina Fragile X Foundation (NCFXF) is pleased to share several important board updates as we continue our work to support, educate and advocate for Fragile X families across North Carolina.
Brittney Miller Elected Board President
At our June board meeting, Brittney Miller was elected to serve as President of the NCFXF Board of Directors. Brittney brings deep commitment, energy, and lived experience to this role. She is an active voice for Fragile X families, helping lead family connections, advocacy efforts, and outreach across the state. Her background in early childhood special education and her personal connection to Fragile X give her a strong understanding of both the joys and challenges the family experience.
We are grateful for Brittney’s willingness to serve in this leadership role and excited for the vision, compassion and momentum she brings to the Foundation.
Welcome, Alexis Poss!
We are also thrilled to welcome Alexis Poss as our newest board member. Alexis brings extensive professional experience as a genetic counselor, a strong understanding of rare disease communities and the importance of family-led organizations. Throughout her career, she has seen how grassroots groups help families find connection, trusted information, and support as they navigate a diagnosis and plan for the future. We are excited to have Alexis join the board and look forward to the knowledge, creativity, and dedication she will bring to our work.
Welcome Back, Renée Clark
We are also grateful to welcome Renée Clark back to the board. Renée rejoined the NCFXF Board in March and has already been an important part of our continued outreach and leadership. Renée has long been connected to the Fragile X community and brings a thoughtful, steady, and family-centered perspective to the Foundation’s work. We are thankful for her continued commitment to helping Fragile X families across North Carolina feel supported, informed, and connected.
Moving Forward Together
These leadership updates come at an important time for the Foundation. We are continuing to grow our outreach, strengthen our family connections, expand advocacy, and build a stronger statewide voice for our Fragile X community. We are grateful to Brittney, Alexis, Renée, and all of our board members for their service and dedication.
Advocacy Day: NC Fragile X Families Bring Their Stories to the General Assembly
The North Carolina Fragile X Foundation (NCFXF) was proud to join families, self-advocates and disability leaders from across the state for the 2026 Intellectual and Developmental Disabilities Caucus at the NC General Assembly on April 29.
The day brought together more than 200 people, 26 legislators, and 15 powerful presentations from individuals with intellectual and developmental disabilities (I/DD) and their family members. The message was clear: North Carolina must continue to act on three critical issues affecting our community: Medicaid, the Innovations Waiver waiting list, and the Direct Support Professional workforce.
The Fragile X community was well represented by members of the NCFXF Board, including Dr. Ave Lachiewicz, Renée Clark, Juan Mollinedo, Steve Strom and Brittney Miller.
The day began with a welcome event hosted by the North Carolina Council on Developmental Disabilities (NCCDD). Participants heard music from The L’Arche North Carolina Jam Together group, remarks from legislative leaders, and a motivational speech from self-advocate Michael Wayne O’Neill before walking and rolling together to the General Assembly where families and advocates participated in an informal listening session with legislators. Ave Lachiewicz and Renée Clark spoke during that session and shared real-life challenges facing Fragile X families across North Carolina.
Later in the day, Brittney Miller and Steve Strom were among the speakers who shared personal stories with legislators during the larger I/DD Caucus event. Their remarks helped lawmakers understand how policy decisions affect families every day. Dr. Ave Lachiewicz was also interviewed as a physician, describing the challenges faced by Fragile X families who need services but remain without access to Medicaid waiver slots. Her perspective helped connect the medical, family, and policy realities that many families experience.
The event drew a standing-room-only crowd and brought together a bipartisan group of legislators from both the House and Senate. Many participants described it as one of the most meaningful events of the year at the General Assembly.
We are grateful to Talley Wells, Executive Director of the NCCDD, and to all the advocates, families and legislators who helped make the day so impactful.
The work does not end with one event. Families are encouraged to thank the legislators who attended, continue building relationships with their elected officials, and keep reminding them of the needs facing the I/DD community.
NFXF International Fragile X Conference Set for July 16 -19
This premiere educational event brings the entire Fragile X community together to learn from one another. The sessions focus on strategies and techniques for living with all the Fragile X-associated conditions, information and emerging research and treatments, and opportunities to build community through storytelling.
Click here to register for the conference. Need help to attend? The North Carolina Council on Developmental Disabilities (NCCDD) assists people with intellectual or other developmental disabilities (I/DD), their families and supporters to attend conferences through the Jean Wolff-Rossi Fund for Participant Involvement. Click here for more information or to apply for funding.
Annual Family & Friends Picnic Coming in October!
Every year in October the NC Fragile X Foundation Board hosts the annual Family & Friends Picnic. Beyond the food and fun, the day represents what makes the Fragile X community so special – belonging, inclusion, and shared understanding. Parents get to connect with others who truly understand the Fragile X journey, while children and adults alike make new friends and celebrate old ones. Watch for more info coming soon!