Tues, Sept 8
7-8 PM
Sip & Chat
Sat, Sept 12
9 AM - Noon
Fragile X Foundation Board Meeting
Tues, Oct 13
7-8 PM
Sip & Chat
Sat, Oct 17
11 AM to 4 PM
Annual Fragile X Picnic
Tues, Nov 10
7-8 PM
Sip & Chat
Sat, Dec 5
9 AM - Noon
Fragile X Foundation Board Meeting
Tues, Dec 8
7-8 PM
Sip & Chat
We are working to build a stronger Fragile X community spanning our 100 counties across North Carolina – reaching from the highest mountains to the deep blue sea. We invite you to join us and help us grow! Click here to learn more about this new statewide effort: Fragile X: We’re Everywhere!
Striking It Up for Fragile X at the Annual Xtraordinary Fragile X Bowl-a-Thon!
On July 12, 2026 the NC Fragile X Foundation brought our community together for our Annual Fragile X Bowl-a-Thon at Clayton Rainbow Lanes as part of our National Fragile X Awareness celebrations. It was a day filled with laughter, friendly competition, fellowship and plenty of strikes and spares amongst our 94 bowlers!
We were especially honored to welcome Representative Donna White, who joined us to show her support for the Fragile X community. Having elected leaders stand alongside families and advocates helps raise awareness and reminds our community that our voices matter.
The winner of our 50/50 Raffle was Rosalie McCuddy. Chris Hickman of Fayetteville took home the 2026 Top Bowler Trophy with the day's top score – and plenty of applause! Special thanks to Gideon and Kerry McCarthy Adams for sponsoring the trophy each year!
The event was made even more special thanks to the incredible generosity of Jennifer Keith, who, along with the help of her husband John, helped transform the bowling alley with beautiful balloons and decorations and provided refreshments and cakes that made the celebration even sweeter. Her thoughtfulness and generosity helped create a fun and welcoming atmosphere for everyone who attended.
Most importantly, the Bowl-a-Thon helps make our work possible. The $9,400 raised will allow the NC Fragile X Foundation to continue providing vital support to families, including helping families attend the NC Fragile X Conference and providing education, resources and outreach to individuals and families who are just beginning their Fragile X journey.
A heartfelt thank you to every volunteer, bowler, planner, community partner, donor, supporter and family who helped make this event a success. Events like this don't happen without the dedication and generosity of our community, and we are incredibly grateful for everyone who gave their time, energy and support.
There is something special about watching our Fragile X community come together – not just to raise funds, but to share stories, laugh, cheer each other on, and simply enjoy being together. The Bowl-a-Thon was a wonderful reminder that we are stronger together.
Thank you for helping us keep the momentum going and for continuing to make a difference for Fragile X families across North Carolina!
We’re already looking forward to next year! Click here to view all the photos from the event.
Celebrating Disability Pride in Durham
On July 25, 2026 the NC Fragile X Foundation was proud to join hundreds of people from across our community for the Durham Disability Pride Event – a joyful celebration of disability, inclusion and the power of coming together.
More than 300 people came out to celebrate, connect, and show their support for a more inclusive future. The event featured more than 30 vendors, artists, speakers, live music, and a parade, creating a space where people with disabilities, families, advocates and community members could come together and be seen, heard and celebrated.
There was an incredible sense of joy, visibility and empowerment throughout the day. Disability Pride reminds us that inclusion isn't simply about making space for people – it is about ensuring people are welcomed, valued, represented and empowered to participate fully in their communities.
We were honored to celebrate alongside so many incredible individuals and organizations who are working every day to create a world where differences are embraced and everyone has the opportunity to belong.
“Seeing a community of multiple people with disabilities and the people who care, accept them and them all in one place, it was a deeply inspiring experience.”- Allison Taylor
Thank you to everyone who stopped by our booth, shared a conversation, offered encouragement, or simply celebrated alongside us. We are proud to stand with the disability community as we continue building a more inclusive, accessible, and accepting future – together.
Wrapping Up a Summer of Sip & Chat
What a summer it has been! Our NC Fragile X Foundation Sip & Chat series wrapped up a fantastic season of learning, connection and meaningful conversation with three incredible speakers who brought valuable knowledge and expertise to our Fragile X community.
Throughout the summer, families, caregivers and advocates had the opportunity to explore topics that impact our loved ones across different stages of life.
Lisa Nesbitt from Disability Rights NC helped us better understand Medicaid, the Innovations Waiver, 1915(i) services and how to navigate the complex service system. Her presentation provided practical information and guidance for families working to access the supports their loved ones need.
Dr. David Tillman, Chair of the Public Health Program at Campbell University, tackled an important topic that families don't always have enough opportunities to discuss: puberty and sexuality in the I/DD community. His conversation helped families think about these issues in a respectful, informed and supportive way.
We closed out the series with Melissa Hazen, Exceptional Children Specialist, who shared her expertise on IEPs, graduation pathways and advocating for our children throughout their educational journey. Her presentation gave families valuable tools to help them navigate educational decisions and advocate for their children's needs.
A huge thank you to all three of our speakers for generously sharing their knowledge, experience and time with our community. The information you provided will continue to benefit families long after each Sip & Chat ended.
And, of course, thank you to everyone who joined us! The questions, personal experiences, ideas and conversations shared by participants are what make Sip & Chat so special. These gatherings are more than presentations – they are opportunities for families to learn from one another, build connections, and know that they aren't navigating the Fragile X journey alone. We can't wait to continue learning, connecting and growing together!
Our Next Sip & Chat is Tuesday, September 8, 7 PM
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.
Have an idea for a future Sip & Chat? Email Brittney at brittney@fragilex.org.
Shining the Light on Fragile X Awareness
July was Fragile X Awareness Month, and communities across North Carolina came together to shine a light on Fragile X syndrome, celebrate families, raise awareness, and help ensure that Fragile X is seen and understood.
One of the highlights of this year's awareness efforts was a proclamation from Governor Josh Stein recognizing Fragile X Awareness Day on July 22, 2026. The designation, enacted by the North Carolina General Assembly and supported through annual gubernatorial proclamations, honors individuals and families affected by Fragile X syndrome while promoting education and awareness of this genetic disorder.
Recognition at the state level is an important step in helping more North Carolinians understand Fragile X and the impact it has on individuals, families, and communities. It also reminds families that they are not alone and that their stories and experiences matter.
On July 22 – National Fragile X Awareness Day – the Durham Performing Arts Center (DPAC) helped us make Fragile X visible in a beautiful way. DPAC illuminated its trees in teal and displayed the NC Fragile X Foundation on its marquee. Seeing Fragile X represented so prominently in our community was an incredible moment of visibility and pride.
We were also honored to have several buildings across North Carolina illuminate in recognition of Fragile X Awareness:
- Truliant Tower – Winston-Salem
- Duke University Hospital
- Puett House – New Bern
- Tryon Riverfront Inn by Hilton – New Bern
Each light represented more than just a building. Together, these lights symbolize hope, awareness, acceptance and the thousands of individuals and families affected by Fragile X.
To every organization, business, community leader and individual who helped us shine a light on Fragile X this July: thank you. Your support helps bring visibility to a condition that is still too often misunderstood or unknown.
Awareness creates understanding. Understanding creates acceptance. And together, we can build communities where individuals with Fragile X are seen, valued, supported and included. Thank you for shining a light on Fragile X!
Finding Connection and Community at the NFXF Conference
In July, members of the NC Fragile X community traveled to Kentucky for the National Fragile X Foundation (NFXF) International Fragile X Conference, a gathering that brings together families, self-advocates, researchers, clinicians, educators and professionals from across the country and around the world.
For many families, the conference is so much more than a few days of educational sessions. It is a place where you can walk into a room and immediately know that you belong. One NC Fragile X Foundation parent shared what the experience meant to her:
“Watching my son amongst all of the other self-advocates being completely in his element and able to learn and make friends gave me an overwhelming feeling of joy. I was so grateful to be able to sit in sessions with other premutation carriers who are walking the same journeys and feeling such an immense amount of support.”
That sense of belonging is one of the things that makes the NFXF Conference so special. It is a place where top Fragile X researchers can be found on the dance floor, where self-advocates are known by name, where families can ask questions without having to explain what Fragile X is, and where friendships that last a lifetime can begin.
The conference provides an incredible wealth of information, with opportunities to learn about the latest research, medical care, education, advocacy, adulthood, self-advocacy, and so much more. Just as importantly, it provides something that can be difficult to find anywhere else: a community that truly understands.
Board member Kate Gregory presented on Maximizing Academic Success with “The Fragile X Way,” focused on raising academic success while lowering anxiety.
We were also thrilled to celebrate Tom Miller, who received support through the North Carolina Council on Developmental Disabilities’ Jean Wolff-Rossi Fund for Participant Involvement to attend the conference for the first time. The Rossi Fund helps individuals with I/DD and their family members participate in conferences and learning opportunities that build knowledge, connections, and advocacy skills.
“Attending my first Fragile X Conference has forever changed my life. When I arrived, I wasn’t sure what to expect. But after listening to the heartfelt, (sometimes funny) experiences shared by caregivers, learning from the sessions, seeing the determination of both researchers and families, all while having the constant sense of acceptance and support, I left with a whole new understanding of what it means to support, love and hold on to hope for a brighter future. The experience and the information helps me be a better dad to my stepson and person overall.” - Tom Miller
For families affected by Fragile X, these moments matter. Seeing our children – and adult self-advocates – surrounded by people who understand them, celebrating their strengths, making friends, and being completely themselves is something truly special.
The NFXF Conference reminds us that while the Fragile X journey can sometimes feel overwhelming, we don't have to walk it alone.
Back to School: New Beginnings, New Hopes
It’s that time of year again – back to school! 📚✏️
As parents, the start of a new school year can bring a whole mix of emotions. We celebrate new beginnings, look forward to new friendships and opportunities to learn, and hope for a year filled with growth and success. But for many Fragile X families, the first day of school can also bring plenty of worries: Will my child feel understood? Will their teachers recognize their strengths? Will they have the support they need to feel safe, successful, and included?
Those hopes and worries are all part of being a parent. And as we send our children off into a new school year, we want to remind every Fragile X family that you are not alone.
We'd love to celebrate our Fragile X kids as they head back to school! Send your child's back-to-school photo to brittney@fragilex.org and we'll give them a special shout-out on the NC Fragile X Foundation Facebook page. Let's fill our page with smiling faces and show everyone just how amazing our Fragile X community is!
We also want to help our children's teachers start the year with a better understanding of Fragile X syndrome. Visit the NC Fragile X Foundation Facebook page for our collection of back-to-school resources designed to help teachers learn more about Fragile X, understand the unique strengths and needs of our children, and create supportive and inclusive classrooms.
To all of our students, parents, teachers and school teams: we're cheering you on! May this school year bring new friendships, new accomplishments, plenty of reasons to celebrate, and a whole lot of learning.
Here's to a wonderful school year! You've got this! 💙
Save the Date Oct 17: Annual Family & Friends Picnic
Mark your calendars! The NC Fragile X Foundation’s Annual Family & Friends Picnic is coming up on Saturday, October 17, from 11:00 AM to 4:00 PM at Lake Mackintosh Park in Burlington, NC!
This is one of our favorite opportunities of the year to step away from the busy schedules of everyday life and simply come together as a Fragile X family. Whether you're a longtime member of our community or new to Fragile X, we would love to see you there!
Enjoy a delicious catered BBQ lunch, with vegetarian and kid-friendly options available, while catching up with old friends and making new ones. And, of course, we'll have plenty of fun planned with our very own NCFX Olympic Games hosted by our master of ceremonies, Tim Field!
Expect laughter, friendly competition, fellowship and the chance to connect with other families who understand the Fragile X journey.
📅 Saturday, October 17, 2026
⏰ 11:00 AM – 4:00 PM
📍 Lake Mackintosh Park | Burlington, NC
📌 RSVP by October 10
Bring your family, bring your friends, and come ready to have some fun! We can't wait to gather together and celebrate the incredible community that makes the NC Fragile X Foundation so special. Let's make some memories together!
North Carolina Council on Developmental Disabilities (NCCDD) Legislative Update
Letter from the Executive Director
Your advocacy made a difference! Thank you. The General Assembly funded over 21 million dollars to increase Direct Support Professional (DSP) rates and over 70 million dollars for Personal Care Services, which means increased rates for CAP-DA and CAP-C. When the federal match is added, the increase in funding is over 200 million dollars.
Please make sure to thank legislators! Also, thank your fellow advocates.
There is no question that our advocacy with the I/DD Legislative Caucus and Health Appropriations Chairs year after year helped make this happen. There is no question that each time you shared your story, you made this happen.
There is an important question, though. Will 1915(i) DSP rates go up with the increase in the Innovations Waiver rates? When the state started 1915(i), it told the Centers for Medicare & Medicaid Services (CMS) that it would keep 1915(i) DSP rates and Innovations Waiver rates the same. I am hoping that we will be able to maintain those rates, but right now we are asking that question even though it is our expectation.
There are other important questions. How much do we need to raise DSP rates to in order to have a sufficient workforce for our aging and disabled population? How much do we need to budget for future DSP wages to maintain that workforce as our population grows? These are critical questions the state is trying to answer with a new Direct Care Workforce Rate Study. Please make sure to participate in this rate study when asked to help with it.
I am reminded of the number of times I wasn’t successful when I planted grass seed. Spring after spring in Atlanta and North Carolina, I would plant grass seed. I would water it and fertilize it, and I was not successful. Then, one autumn, I finally decided to try to grow grass. We now have a flourishing grass lawn in our shaded front yard. It took the right timing and a lot of work.
This summer, we saw some fruit from all the labor we put into our I/DD advocacy. It is just the beginning. We have so much more work to do, but we have made progress. We have significant challenges, including a grave threat to Olmstead and substantial budgetary challenges to Medicaid, but we have each other and our advocacy. We will continue to make a difference.
Legislative Update provided by the North Carolina Council on Developmental Disabilities (NCCDD)