Newsletter Nov/Dec 2023


December 20
7 - 8 PM
Sip & Chat

January 17
New Time!
Noon to 1 PM
Sip & Chat

February 21
Noon to 1 PM
Sip & Chat

February 26 & 27
20th NFXF Advocacy Day
Washington, DC

March 20
Noon to 1 PM
Sip & Chat

April 17
Noon to 1 PM
Sip & Chat

May 15
Noon to 1 PM
Sip & Chat

June 19
Noon to 1 PM
Sip & Chat

Happy Holidays from the NCFXF President


Dear NC Fragile X Foundation Members and Supporters,

As we approach the end of this transformative year, I find myself reflecting on the remarkable journey we've undertaken together as a community.

Serving as the President of the Board for the North Carolina Fragile X Foundation has been an honor and a privilege, and I am deeply grateful for the opportunity to work alongside such dedicated individuals who share a common commitment to making a difference in the lives of those affected by Fragile X.

I want to express my heartfelt appreciation to the hardworking members of our board, whose unwavering dedication and tireless efforts have been instrumental in the success of our initiatives throughout the year. Your passion and commitment have truly made a positive impact on our community, and I am grateful to have each of you by my side.

This year marked a significant milestone for our Foundation as we transitioned back to in-person events after a challenging period of virtual engagement due to the COVID-19 pandemic. It has been heartening to witness the resilience and strength of our community as we came together face-to-face for all our events, fostering a sense of connection and camaraderie that virtual interactions cannot fully capture.

In February, a group of individuals from North Carolina participated in the National Fragile X Foundation's Advocacy Day in Washington DC, advocating for the needs and concerns of our community at the national level. This collective effort exemplified the power of our united voice and the impact we can have when we come together to raise awareness.

In March, the North Carolina Council on Developmental Disabilities approached our board about establishing a North Carolina Fragile X Awareness Day, culminating in our first proclamation by Governor Cooper recognizing Fragile X in our state. This recognition is a testament to our collective advocacy efforts and a significant step forward in raising awareness about Fragile X in North Carolina.

Our online Sip and Chat virtual gatherings on Zoom, hosted by the dedicated Kerry McCarthy Adams, have provided a valuable platform for our community to connect, share experiences, and offer support. These virtual gatherings have become a vital lifeline, ensuring that our community remains connected and supported even in the face of physical distance.

In July, Dr. Ave Lachiewicz and I had the opportunity to attend and speak to the Knights of Columbus State Director's meeting in Cary and share our thanks for their continued support of the work of the Foundation. As a supporter since 1989, the Knights have been instrumental in the success of our Foundation.

In July, we celebrated Fragile X Awareness with a memorable bowlathon in Clayton, NC. I extend my sincere thanks to Lynne Martin, Adam Martin, Jennifer Keith, and her family for their hard work in organizing and ensuring the success of this event at Rainbow Lanes. Your dedication and creativity truly made the event special, from the beautiful decorations to the amazing cupcakes provided by the Keith family.

As part of Fragile X Awareness Day in July, we were honored to meet with DHHS leaders in Raleigh to discuss the unique needs of our families. Chief Deputy Secretary Mark Benton and DMH Director Kelly Crosbie listened to the impactful stories shared by the Martin Family, the McCarthy Adams Family, the Taylor Family, and the Tillman Family. We anticipate that this meeting will pave the way for further progress and support for our community in the coming year.

October brought us the joyous occasion of our Family Picnic at Lake Mackintosh in Burlington. The Tim Fields family, who served as the Chair of the event, orchestrated a memorable day filled with education, camaraderie and laughter. The barbecue menu, agency fair, and a range of activities designed for maximum fun made it an unforgettable experience for all who attended. Events like these not only strengthen the bonds within our community but also provide valuable moments of joy and respite for our families.

As we look back on the past year, it's clear that each event, gathering, and advocacy effort has contributed to the growth and impact of the North Carolina Fragile X Foundation. The collective energy and dedication of our board members, volunteers, and supporters have been the driving force behind our success.

This year, you have seen more e-mails, newsletters and communications from the North Carolina Foundation. We have received several compliments about how informative our newsletters have been and how helpful they are. Nancy and Gordon O'Neill have been instrumental in this effort. They have generously donated time and effort to help the Foundation have a clear communication strategy and kept us on track with this plan. They are no strangers to Fragile X from their work in the Atlanta area with a local Fragile X group and family and have come to know and love our Fragile X community here in North Carolina.

I want to extend my deepest appreciation to everyone who has played a part in making this year so meaningful. Whether you volunteered your time, attended an event, or supported us in any way, your contributions have made a difference in the lives of those affected by Fragile X.

Looking ahead to 2024, I am optimistic about the continued growth and impact of our Foundation. Together, we can build on the momentum generated this year and work towards a future where individuals and families affected by Fragile X receive the understanding, support, and resources they deserve.

Thank you for being an integral part of the North Carolina Fragile X Foundation family.

I am truly honored to serve as your President and look forward to the opportunities and challenges that the coming year may bring.

Wishing you all a joyous holiday season and a hopeful new year.

Warm regards, Steve Strom

Sip & Chat – Last 7 PM Meeting December 20!


2024 Upcoming Dates
for Monthly Sip & Chats
Wednesdays at Noon

January 17
February 21
March 20
April 17
May 15
June 19

The December Sip & Chat call will be the 3rd Wednesday of the month, December 20 from 7 to 8 PM. Please register in advance here.

Moving to a New Time in January!

After six months of evening Sip & Chats, we are shifting the time to lunchtime. Note the NEW TIME will be Noon - 1 PM, beginning in January. At the end of these dates, we will review participation levels and revisit a plan for the following year. Mark Your Calendar!

This initiative is made possible by volunteers. If you would like to see a different time or day offered, feel free to provide feedback via email to

To view information shared during past Sip & Chats, use this link: Sip & Chat Notes. Some of the resources are also shared on the NCFXF Facebook page here.

Medicaid Expansion Now Live!

Beginning on Dec. 1, 2023, NC Medicaid now covers people ages 19 through 64 years with higher incomes. You may be able to get health care coverage through Medicaid even if you didn’t qualify before. Medicaid pays for doctor visits, yearly check-ups, emergency care, mental health and more – at little or no cost to you. Click here to download an informational flyer in both English and Spanish.

Innovations Waiver upper limit raised from $135,000 to $184,000 per slot!

The waiver limit may exceed $184,000 for those individuals using the Supported Living Level 3 services. More to come in the next newsletter. Check with your care coordinator for more details.

Appendix K Flexibilities Extended to Feb 2024

To avoid a disruption in care and support consumers and their families, NC Medicaid is extending Appendix K temporary flexibilities that are part of the Innovations waiver beyond November 11, 2023 to February 29, 2024, while the Centers for Medicare & Medicaid Services (CMS) reviews the Innovations and Traumatic Brain Injury Waiver amendments. For more details click here.

Increase in Direct Support Worker Wages

NC DHHS has announced higher reimbursement rates for Innovations waiver services which means that there will be an increase in the direct support worker wages. These rate increases are retroactive to 7/1/2023. Ask your provider about increases for your worker and for yourself if you are a relative as provider. Click here to view the details.

SOLD! Christmas Week in the Smokies!


Thank you to Mary Lou Jackson for for donating a one week Christmas vacation in Pigeon Forge in her condo in Tennessee to the NC Fragile X Association. The condo was auctioned on eBay and successfully sold last month. Please consider a donation of this type in the future to support NCFXF.

20th NFXF Advocacy Day, Washington, DC
February 26 & 27, 2024

The 20th National Fragile X Foundation (NFXF) Advocacy Day is planned for February 26 - 27, 2024 in Washington, DC. Nearly 100% of Congressional offices are accepting in-person meetings. Congressional offices are now offering a hybrid option with some Advocates in-person and some virtual in the same meeting.

NFXF Advovacy Day Logo - Capital-transparent


Training will include a combination of mandatory online self-paced training ahead of time and group training/preparation at the Hilton Arlington Towers Hotel on the afternoon of Monday, February 26. They will also be hosting a virtual Zoom meeting earlier in the month of February for new or returning advocates.

Agenda (specific times will be shared closer to the event)

  • Monday, February 26th: Afternoon training and reception
  • Tuesday, February 27th: Meetings at Capitol Hill

Register for the event here.


The National Foundation has limited scholarship scholarship funding for individuals, families, self-advocates or siblings who have not previously attended a NFXF Advocacy Day in Washington, D.C. or advocates who might not otherwise be able to attend due to limited financial resources. You can learn more about the scholarships from the National by clicking here.

For our North Carolina families, the North Carolina Council on Developmental Disabilities has scholarship funding through the Jean Wolfe Rossi for Participant Involvement Fund. First in Families of North Carolina also has funding to attend conferences. Please e-mail First in Families of North Carolina at to inquire about eligibility.
Finally, if your family member is on the North Carolina Innovations waiver, funding for attending the conference is available through the waiver. Please contact your MCO care coordinator for details. Please apply early. Certain deadlines apply to all of the scholarships.

North Carolina Delegation

If interested in attending as a North Carolina delegate, please contact Steve Strom at