Support Needed for the 2025 NBIA Family Conference
July 2024
Our 2023 family conference set the bar high for the 13th International Family Conference to be held in Greenville, South Carolina May 29 - June 1, 2025. As we dive deep into planning we are quickly realizing the great need for conference sponsorships to help cover the costs, which we are estimating to be higher than ever at $150,000.
Sponsorship opportunities start at $500 and offer a variety of benefits depending on the level of sponsorship. These benefits may include recognition in our conference program, complimentary registration, prominent signage at the event, mentions in our promotional materials, and unique opportunities to connect directly with attendees.
Sponsorship not only helps us offset the substantial costs associated with organizing the conference but also demonstrates a commitment to supporting the NBIA community. We are asking our community members to consider being a sponsor yourself, or helping us identify potential sponsors, such as family, friends, or local businesses. Your connections and insights are invaluable in helping us secure the necessary funding and resources to make the conference a success.
If you have any sponsorship leads please reach out to Amber Denton at adenton@nbiadisorders.org. For more information on sponsorship opportunities and to sign up, please visit this link.
We are also proud to continue offering scholarships to those needing financial assistance to attend the family conference. These scholarships ensure that financial barriers do not prevent families from benefiting from the invaluable resources, support and connections that our conference provides. The impact of attending the conference can be life-changing, offering families the chance to learn from experts, share experiences with others facing similar challenges, and gain a sense of hope and community.
Scholarship recipient and NBIA sibling, Fernanda Garcia, says, “Last year, my family and I had the opportunity to attend the family conference organized by the NBIA Disorders Association, thanks to its scholarship program and the support and patience of former president, Patricia Wood. This event marked a turning point for us, as it opened the doors to a community where we finally felt heard, seen, and understood. It also allowed me to witness and experience firsthand the love and commitment that the association has for its mission and its community, which has deeply inspired me to become more involved and support this association as much as possible for a cause so close to my heart. The transformative power of this event makes it simply unforgettable, and I will be forever grateful for the amount of time and effort they put into it as well as their support in making it possible for us to experience it.”
Contributions to our scholarship fund directly support families who might otherwise be unable to attend, ensuring that they can access the vital information and support they need. Every contribution, no matter the size, makes a significant difference in the lives of these families. If you would like to donate to our scholarship fund and help an NBIA family attend the conference, please do so here.
Hotel booking will open at the beginning of October 2024, and conference registration will open at the beginning of 2025. We encourage you to mark your calendars and stay tuned for further details on how to register. We appreciate your continued support and are excited to welcome you to Greenville for what promises to be an unforgettable experience at the 13th International NBIA Disorders Association Family Conference.
Greenville, South Carolina Chosen as the Site for the 13th International Family Conference
Mark your calendars for the 13th International NBIA Disorders Association Family Conference. It will be held May 29 to June 1, 2025, in Greenville, South Carolina. This event promises to be another unforgettable experience for NBIA families and is indeed an event not to be missed.
The Embassy Suites Conference Center and Golf Resort, with its affordable room rates starting at $149 per night, has been carefully selected as the venue to host our upcoming conference. Complimentary breakfast and evening receptions, picturesque surroundings, ample meeting space, and a complimentary airport shuttle make this site an excellent option for our NBIA families.
With an agenda filled with vital educational sessions and plenty of social activities designed to foster lifelong connections among families, we hope every family leaves feeling fulfilled, hopeful and supported on their NBIA journey. Our conferences are known to be life-changing events for families, leaving them counting the days until the next gathering.
We will begin our conference on Thursday morning with disease-specific clinical sessions guided by NBIA experts. These sessions will provide the most up-to-date information on clinical diagnosis and disease presentation, as well as new insights gained in understanding the complexities of each unique disorder. Families will have the opportunity to submit questions for the expert panel, ensuring that discussions are centered around topics of high interest and value.
Thursday evening will be a chance for the entire group to gather at a nice dinner where we will get to know each other and officially kick off the conference. Friday and Saturday will be filled with informational sessions that support families along all points of their walk with NBIA. These sessions will include our highly anticipated disease-specific research updates highlighting the current research landscape and future directions for NBIA research initiatives. To get a sense of what to expect during the conference, check out recorded sessions from the last family conference: ReUnited, or look back at our September 2023 newsletter. These resources provide insight into the various session types offered throughout the event, giving you a glimpse of what this experience entails.
Additionally, there will be plenty of time to socialize with other NBIA families, make new lifelong friends, and catch up with families you may have met online or at a previous conference. Kick off your day chatting over coffee, share personal experiences in our disease-specific share sessions or unpack the day with fellow conference attendees over two free drinks and light snacks at the evening reception. Parents and caregivers can find peace of mind knowing that a dedicated care room will be available for their NBIA loved ones. Here they can freely engage in activities such as dancing, singing and interacting with peers under supervised care while caregivers attend sessions.
The conference would not be complete without our traditional offsite family picnic, which will be held at Conestee Park — an event centered around a delicious lunch, games and activities, and a group picture. The Saturday night dessert social and dancing is a highlight of the conference, where attendees can unwind with sweet treats and cut loose on the dance floor. You don’t want to miss this; it's truly the icing on the cake.
In addition to supporting our families, the conference serves as a means to fulfill another critical component of our mission at NBIA Disorders Association: public education. We sponsor physicians interested in learning about NBIA disorders to attend the entire conference. This allows them to participate in clinical sessions, learn directly from NBIA experts, and formally and informally engage with families. This initiative raises awareness and expands our database of knowledgeable clinicians.
While in South Carolina, we encourage you to make a vacation out of your conference experience. Greenville offers many attractions, including the picturesque Falls Park on the Reedy, the Greenville Zoo, an award-winning Children’s Museum and the Greenville County Museum of Art. Whether you're strolling along the scenic Swamp Rabbit Trail, browsing the boutiques of downtown Greenville, or sampling local craft brews at one of the city's breweries, there's something for everyone to enjoy during their time in Greenville. Make the most of your conference experience by immersing yourself in all that this vibrant city has to offer. Begin planning today with this virtual travel guide.
For those interested in playing a more active role in shaping the conference experience, there is an opportunity to join the Conference Planning Committee. You can use your unique talents to help us plan essential pieces of our conference, such as our family picnic, touching memorial tribute, an exciting care room, or helping gather silent auction items. To inquire about becoming a part of this vital team or to learn more about the committee, please email Amber Denton at adenton@nbiadisorders.org.
We will regularly update the community on our progress as plans are finalized. Further details on hotel booking, conference registration pricing, and agenda items will be released as they become available. For now, save the date, spread the word, and begin preparing for an unforgettable experience at the 13th International NBIA Disorders Association Family Conference.
