UPCOMING EVENTS
September 9
9:00 AM
Board Meeting
September 20
7:00 to 8:00 PM
Sip & Chat
October 7
11 AM to 4 PM
Family & Friends Fragile X Picnic
October 17
7:00 to 8:00 PM
Sip & Chat
November 15
7:00 to 8:00 PM
Sip & Chat
December 2
9:00 AM
Board Meeting
December 20
7:00 to 8:00 PM
Sip & Chat
Fragile X Awareness Month Ends with a Bang!
July was exciting as the monthly, statewide Sip & Chats kicked off, the Xtraordinary Bowl-A-Thon rolled on, the 2023 Fragile X Family Conference brought us new information and Governor Roy Cooper proclaimed Saturday, July 22 as Fragile X Awareness Day across North Carolina.
The big event for the month was a Community Conversation/Ice Cream Social with Mark Benton, Chief Deputy Secretary of Health, Department of Health and Human Services (DHHS), and Kelly Crosbie, Director, Div. of Mental Health, (Developmental Disabilities and Substance Use Services. A number of Fragile X families had the opportunity to share their stories with the DHHS leaders and to learn more about DHHS and its services.
“Having a community conversation with DHHS leaders was a significant opportunity to bring our families together to collaborate on and advocate for closing the service gaps intended to provide greater independence to our members living with Fragile X,” Steve Strom, President of the Foundation said. “It was an important time to push for changes in North Carolina services for individuals with intellectual and other developmental disabilities (I/DD).“
A number of parents shared their personal stories, each representing a different stage of life with their Fragile X family member.
“Through this sharing, Director Crosbie was able to learn more about Fragile X Syndrome and to better understand the day-to-day realities faced by our families,” Strom explained, “and she committed to future collaboration with the Fragile X community to address our needs and concerns.”
Fragile X Awareness Month was the opportunity to unite hearts and minds, and shine a light on the strength within the Fragile X community, foster understanding, compassion and hope for a brighter future.
The July 31st event was live-streamed to a statewide audience on Facebook Live so everyone could participate across the state.
Saturday, October 7, 2023
11:00 AM to 4:00 PM
Rain or Shine!
Lake Mackintosh Park Club House
Burlington, NC 27215
2023 Family & Friends Fragile X Picnic Saturday, October 7
Our annual Family & Friends Picnic is just around the corner and registration is open - click here! Tim Field and his family are organizing the event and urge everyone to come join the fun. It’s free to everyone and lunch is provided.
Everyone is looking forward to seeing familiar faces and making new friends! Join us to celebrate our NC Fragile X community and enjoy:
- Catered BBQ Lunch (Vegetarian & kid-friendly options)
- Scenic and Peaceful Location on the Lake
- Friendly Faces, both Familiar and New
- NCFXF Olympic Games!
- Service providers
A number of resources and service providers will be at our picnic to provide information about better connecting with service providers and the system and getting feedback from the state’s disability community. As of September 1, two MCOs, a state agency and a statewide service provider are planning to join in the fun.
Knights of Columbus Faithful Support
A special thank you to the Knights of Columbus in North Carolina for their continuing financial support of the NC Fragile X Foundation that began in 1989. As part of Fragile X Awareness Month, President Steve Strom and Past President Ave Lachiewicz attended and spoke at their luncheon in July and were able to thank them for faithfully donating to the Foundation over the years.
At the luncheon, Rick Lewis, State Treasurer for the Knights of Columbus, presented Steve Strom and Ave Lachiewicz with a $7,000 check from the Knights of Columbus and the LAMB Foundation of NC for their 2023 contribution.
Bowl-a-Thon Rolls On!
It was afternoon of fun and fellowship as the NC Fragile X Foundation hosted the annual Xtraordinary Fragile X Bowl-a-Thon on July 23 in celebration of National Fragile X Awareness Day. From Jennifer Keith’s beautiful decorations and delicious cupcakes to the volunteers from our sponsor, Zynerba (Dr. Stephen O'Quinn, Lisa O'Quinn, Donna Gutterman, Terri Sebee and her grandson Joshua) and our founder and xtraordinary raffle ticket seller, Deby Burgess, we all enjoyed our first bowl-a-thon since the pandemic.
“Families were so excited to meet up with each other and renew old friendships!” Steve Strom, President of the Foundation said, “It was friendly competition benefiting our Foundation.”
Congratulations to Gideon Adams, winner of the coveted bowling trophy for 2023 and to Phoebe Field, winner of the 50/50 raffle.
After this year’s success, we are looking forward to another bowl-a-thon in 2024 with the date to be announced after the January board meeting. Special thanks to Pam Dempsey from the North Carolina Council for Developmental Disabilities (NCCDD) for help promoting the event and Jennifer Keith for the decorations!
Last but not least, a very special thanks to Rainbow Lanes Family Fun Center, Clayton, NC for continuing to host this event.
Sip & Chat – Let's Just Talk!
Upcoming Dates
for Monthly Sip & Chats
Wednesdays
at 7 PM
September 20
October 17
November 15
December 20
Please register in advance
for the event and you will receive a link to the
Zoom meeting.
Fragile X parents, friends and family are welcome to join the monthly call on the 3rd Wednesday of the month at 7 PM - no agenda, no pressure, just whatever is on your mind. This is an Xtraordinary opportunity to connect with other parents, resources and professionals. Our next Zoom call is Wednesday, September 20 at 7 PM. Please note:
- Please sign up here, even if you are a "maybe" to help gauge interest in this type of event.
- When resources are discussed or shared during our chats, a link will be posted on our Facebook page
- Based on last month’s discussion, we invited someone from Triangle Disability and Autism Services (an affiliated chapter of The Arc) to join us during September's Sip & Chat.
Triangle Disability and Autism Services has many new programs and services, including the Triangle Self-Advocacy Network, a Transitional Day Program (coming soon), Guardianship Services, Mental Health Services & Counseling (accepting some health insurance plans and Medicaid), Music Therapy and more. Join the September call and come with questions!