Newsletter Nov/Dec 2023

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