The conference is a fun and powerful experience combining education, collaboration, and community-building. Attendees can discover the latest advancements in SETBP1 research, connect with fellow SETBP1 families, and hear from leading researchers and experts in the field.
Dates: October 11-13, 2024
Location: Austin, TX
Hotel: Cambria Austin Uptown
Hotel guest room rate: $149
Volunteer Information
Interested in Volunteering at the Conference? We have volunteer opportunities to help with registration, in the child care rooms, help with the Saturday dance, or to help out in general. Click below to express an interest.
Interested in helping sponsor our 2024 SETBP1 Family & Research Conference. Check out our Sponsorship levels and details here
Bumble Bee Platinum Level:
Bees Knees Silver Level:
Busy Bees Bronze Level:
Friday, October 11th
- Researcher Check-In 8:00am-9:30am
- Pre-Meeting Informal Gathering 9:30am-10:00am
- Researcher Meeting 10:00am-4:10pm
- Family Research Participation 8:00am-5:00pm
- Family Registration 12:00pm-7:00pm
- Family And Researcher Meet and Greet with appetizers 5:00pm-6:30pm
Saturday, October 12th
- 7:15am-8:30am Breakfast
- 8:00am-5:10pm Hospitality Room/Childcare (optional)
- 7:00am-5:00pm Family Research Participation
- 8:30am-8:50am Welcome
- 8:50am-9:30am Simons Searchlight SETBP1 Registry Update
- 9:30am-10:30am SETBP1 Participatory-based Research Project Updates
- 10:30am-10:45am Break
- 10:45am-11:55am Independence Panel
- 12:00pm-1:00pm Lunch for Conference & Childcare Attendees
- 1:00pm-2:00pm SETBP1 Cellular and Animal Research Project Updates
- 2:00pm-2:55pm Ask a Therapist/Ask a Parent Panel
- 2:55pm-3:10pm Break
- 3:10pm-4:00pm Afternoon SETBP1 Parent/Caregiver Breakout Sessions
- 4:00pm-4:55pm Medical Specialists Panel
- 4:55pm-5:00pm Wrap-Up
- 5:10pm-5:25pm SETBP1 Conference Attendees Photo
- 5:25pm-6:30pm SETBP1 Gathering at Pool (Unofficial) /Free Time
- 6:30-7:30pm Dinner
- 7:30pm-9:30pm Awesome Dance Party
Sunday, October 13th
- 7:00am-3pm Family Research Participation
- 7:15am-8:30am Breakfast
- 8:00am-9:00am Closing
- 9:10am-noon SETBP1 Family Outing at Museum of Illusions at The Domain and Lunch afterwards (optional)
Conference guests have access to special conference rates at Cambria Hotel Austin Uptown, which is the same location as the conference.
Hotel Rate: $149 per night plus applicable taxes – available until the block fills up or until September 20th.
Hotel accommodations should be booked separately from registration and are not included in registration costs.
Cambria Hotel Austin Uptown near the Domain
13205 Burnet Road,
Austin, Texas 78727
(512) 580-2847
Parking: Parking at the hotel is free. You can request a rideshare (Uber/Lyft) in the designated area outside the Austin Bergstrom airport to travel to the hotel from the airport.
Conference registration is now open! Below is a list of conference costs for your planning.
You may book your hotel rooms in the Accommodations section. Hotel costs are not included in the registration costs. The special rate for the hotel is valid through September 9, 2024. After September 9, 2024 or the room block fills, reservations will be based upon hotel availability..
Conference Pricing – August 21th – Sept 20th
Child (5-15)
Child (<5)
SETBP1 Individual
$65
Free
Free
Conference registration pricing includes access to the Meet and Greet, 2 breakfasts, 1 lunch, and dinner and dance party. Adult pricing also includes access to all research and educational sessions.
Childcare registration is a separate registration from the conference registration. Childcare registration will be charged separately from conference registration. The registration link will be available as the conference approaches. Register for childcare before September 28th.
An optional SETBP1 family outing will also be available Sunday morning and registration for that will be available as the conference date approaches.
On-site research opportunities will be available for attendees during the conference.
EEG Biomarker Study & Additional Assessments
Simons Searchlight Biospecimen Collection
School Assessment Evaluation Collection
More information will be added as the conference approaches.
Childcare is available for children ages 1 year old to young adults. The childcare is for children with SETBP1-HD and related disorders and their siblings.
Childcare will be provided with a 1:2 – 1:5 ratio, depending on each individual child’s needs. There will be 2 childcare rooms on-site. A caregiver can remain with the child in one of the rooms at no charge. A child can remain in one of the rooms without a caregiver for the childcare cost.
Childcare Cost: $35 per child for Saturday
Childcare will be provided by elementary and middle school special education teachers and teacher assistants. Volunteers will also be in the childcare rooms to help entertain the kids and help the childcare providers.
Childcare registration is a separate registration from conference registration. You will be charged separately for childcare registration. Please register each child using the Register button below.
SETBP1 Society will offer a limited amount of scholarships based on family need to help offset the costs of the conference. Steps to apply for the scholarship:
- Recommended as Early as Possible: Register for the conference. (Early bird pricing ends August 20th and regular registration closes September 20th)
- Complete the Travel Scholarship form with your child’s genetic report provided.
- Attend the 2024 SETBP1 Family & Research Conference.
- Complete the post-event survey and include a testimonial.
Approved scholarships will cover up to 2 nights (domestic travel) or 3 nights (international travel) for 1 hotel room at the Cambria Uptown Near the Domain.
Additional Travel Support for Families
You may also be eligible to receive travel and attendance support from The National Organization for Rare Disorder’s Education Support Program. Applicants must be a US citizen or permanent resident of the US. Please see their flier for information on how to apply. Another source of travel and conference support is through your child’s IEP (Individualized Education Plan). Click here to learn more.
Travel Support for Researchers
Uplifting Athletes has a program to assist with travel expenses for rare disease researchers and doctoral students with an interest in the rare disease field. Applicants must reside in the United States or Canada and meet specific requirements. Learn more here.