Charleston, S.C., chosen as site for tenth family conference in 2019
The Palmetto State’s jewel, historic Charleston, S.C., is the venue for the Tenth International NBIA Disorders Association Family Conference, May 30 to June 2, 2019.
Charleston is a seaport city, established in 1670, and is known for the Battle of Fort Sumter, which signaled the start of the Civil War in 1861. Today, the city is known for its well-preserved architecture, sophisticated restaurants and friendly people. Charleston has received many accolades, including being voted by readers of Condé Nast Traveler magazine as the No. 1 city in the U.S. from 2011 to 2015 and "America's Most Friendly City” in four of the past five years.
Our conference will be held at the Embassy Suites by Hilton at 5055 International Boulevard, North Charleston. It’s just 2 miles from the Charleston airport and is connected to the Charleston Area Convention Center, making it a perfect fit for our growing needs.
Families can start making hotel reservations now. The Embassy Suites by Hilton has created a special website for our group, making it possible for participants to easily reserve a room. The cost is $139 a night for up to two adults and any children 18 and under. Each additional adult is an extra $10 per night. The hotel has made an exception to not charge anything extra for adults who have a g-tube for feeding.
For those who require handicapped-accessible rooms, plan ahead. The hotel presently has only seven of these rooms available, and they all come with a king bed. Four have tubs and three have roll-in showers. They are renovating to add three handicapped accessible rooms with double beds and tubs, and hope to have them available to reserve by fall. If you require a handicapped-accessible room and rooms that meet your needs have been reserved, please contact me at pwood@NBIAdisorders.org and I will provide information on other Hilton hotels within walking distance that have handicapped accessible rooms.
The conference will kick off that Thursday evening with dinner and an opportunity for families to get to know each other and feel more comfortable engaging throughout the weekend. It will conclude at noon on Sunday.
Some first-time families who make an appointment with our NBIA experts will need to arrive a day or two earlier, to discuss health concerns. We hope to expand the number of knowledgeable clinicians to meet growing demand from families.
Conference registration materials will be posted on our website in early 2019 and families will be notified when it’s time to register.
A limited number of scholarships will be available to help defray costs for some who otherwise couldn’t attend. Depending on how many apply and how much our donors provide, we may be able to waive registration fees and help with hotel costs. Other travel costs are not covered. Scholarship applications will be available when registration opens next year. If you would like to help a needy family, please donate to our scholarship fund by mailing a check with the form found on the right, or donating online.
The conference picnic will be held at a nearby park on Saturday afternoon. There is an outdoor area with picnic tables, barbeques, a horseshoe pit and sand volleyball court. In addition, a building attached to the site can be used in case of rain or in case you need a cool spot to escape the heat.
In the meantime, we could use your help. We will be seeking volunteers very soon to serve on our Family Conference Planning Committee. Volunteers will be working in tandem with board members to select topics for sessions, recruit speakers, organize child care, and plan activities, such as our memorial tribute, dessert social and closing ceremony. If any of these tasks interest you, or if you have ideas to share, we want you!
Family members who filled out our connect form on the website and expressed an interest in volunteering will be sent an email to state whether they want to to participate. Any other individuals wishing to participate are also welcome. You do not need to attend the conference to be on the planning committee. Please contact Colleen Lukoff at clukoff@NBIAdisorders.org if you want to help make this conference our best ever.
Retrophin, Inc., is again our premier conference sponsor. We are grateful for their continued sponsorship, going back to 2013. In addition, ApoPharma, Inc., and CoA Therapeutics are elite sponsors for our 2019 conference.
These companies are helping us greatly, but we still need additional sponsors to help us defray conference costs. As we continue to grow, our expenses also rise, and our projected budget is expected to make this one our most expensive gathering ever. We strive to keep registration fees low, and sponsorships help make that possible.
If you would like to be a sponsor, or send a letter to potential sponsors requesting support, please see our sponsorship information available on this page, or click on the button below to use our online system to become a sponsor. If you have any questions, please feel free to contact Colleen Lukoff by email at clukoff@NBIAdisorders.org or call her at 760-591-9455 for more information.
We will keep everyone updated as our plans evolve.