2024

Attendee Information

divider

We are honored to have you joining us in Dallas for our Glut1 Deficiency Summit! This will be our 11th community convening, and we are so excited to be hosting this important event. To help you prepare for the experience, we are providing some additional details below that will give more insights into what to expect, how to plan, how to find additional resources, and how you can explore more of the area while you are in Dallas.

Copy of Dallas logo card-2

scientific

JUNE 26-27

We will gather the scientific community to hear the latest updates in research and therapy development and provide opportunities to deepen collaborations and develop new ones.

The first day will begin with lunch and afternoon lightning talk sessions across a broad range of collaborative partners. The second day will feature a full day of presentations.

clinical

JUNE 28

The clinical sessions will feature opportunities to learn more about symptoms and best practices in clinical care from expert neurologists and dietitians.

These sessions are ideal for patients, families, clinicians, and anyone wanting to understand the patient experience better and how to provide the best care for diagnosis and disease management.

family

JUNE 29

The family sessions will feature information and resources to help patients and families navigate the challenges of this disease across a number of topics as well as provide opportunities to strengthen connection and support across the community.

These sessions are ideal for patients, parents and caregivers, siblings, friends, and extended family members.

conference details:

general details:

  • Registration will be separate for each day of the Summit so attendees can customize their experience.
  • The focus will be different each day, but all stakeholders are welcomed and encouraged to attend all sessions of interest.
  • A welcome social will be held on Thursday evening, June 27th for all attendees.
  • Registration is now open and will close on June 12, 2024.
agenda information

venue and guest room reservations:

The Omni in downtown Dallas will be the venue for the Glut1 Deficiency Summit

  • We've secured a room block with a discounted daily room rate of $239 plus tax
  • A number of additional hotel discounts will be available to Summit guests, including parking and the on-site spa
  • Hotel guest room reservation instructions will be provided in the registration confirmation receipt
  • Room reservations and rates are available on a first-come, first served basis until May 11th at 5:00 PM Central or until the room block is sold out, whichever comes first. After that date, reservation requests will be based on the hotel's prevailing rate.
  • We request that all conference attendees who need overnight accommodations book rooms at the Omni through the special instructions - this helps us meet our contract obligations, keeps registration and hotel prices lower, and helps you as an attendee get the most out of the conference experience
  • You’ll get further directions on how to make room reservations at the discount rate in your Summit registration confirmation receipt. Not sharing that information publicly on our website helps protect from scammers who find the discounted rates and take our rooms

activity rooms:

  • Activity rooms will be available for use during the Clinical and Family Sessions (Friday and Saturday) for those who will not be attending presentations
  • These rooms will have arts & crafts, games, puzzles, and other activities available
  • Invited guests will be providing entertainment and special activities (more details to come!)
  • Staff will be available to monitor the room but no supervision will be provided
  • Attendees who use these activity rooms should plan to provide their own supervision (see Child Care Provider registration option)
  • One activity space will be a dedicated Family Room with live streaming of presentations so that those who do not have child care can watch and not worry about disturbing others

research projects:

Research Participation Opportunities:

MOVEMENT AND BIOMARKER  STUDIES

  • A number of on-site research opportunities will be available for patients during the Summit
  • These studies are designed to help provide important insights that will potentially lead to better and easier diagnosis and treatments
  • Learn more by downloading this flyer from the team
  • Dr. Juan Pascual and his UT Southwestern/Weill Cornell team will conduct the IRB-approved studies during the Summit
  • Please reach out to the study team to learn more and sign up:  [email protected]
  • The study team requests that participants wear shorts (so knees are visible) and short sleeved shirts (so elbows are visible) and be prepared to be barefoot for the walking portions.

fNIRS STUDY

Scientists are working to understand how Glut1 deficiency affects the brain. Some scientists have used questionnaires to understand how Glut1 affects mood and the ability to think clearly. Improved understanding will help doctors develop better treatments for the disease.

Researchers at Children’s National Medical Center are using a portable device that measures brain signals. They will test individuals with and without Glut1 deficiency to see how they differ.

Participants will use a wearable device called fNIRS while performing a cognitive task. fNIRS uses light to evaluate your brain performance. The study will last one hour. There is only one session and you do not have to return for another visit. fNIRS sessions will take place on Wednesday, June 26th only during the Glut1 Deficiency Summit.

Please reach out to the study team to learn more and sign up: Dr. Kosar Khaksari or Ana Morena Chaza

exhibitors:

KetoVie/Cambrooke
Functional Formularies
Nutricia/KetoCal
GliaPharm
Keto Hope Foundation

Exhibit Hours:
Thursday, 6/27:  7:00 to 9:00 PM
Friday, 6/28:  8:00 AM to 5:00 PM
Saturday, 6/29:  8:00 AM to 5:00 PM

information and links:

conference registration check-in and help desk:
The registration and help desk will be located in the Trinity Ballroom foyer area and staffed during the following times:

  • Wednesday, June 26th:  10:00 AM to 6:00 PM
  • Thursday, June 27th:   7:00 AM to 7:00 PM
  • Friday, June 28th:  7:00 AM to 5:00 PM
  • Saturday, June 29th:  7:00 AM to 5:00 PM

hotel information:

  • Omni hotel website
  • check in time: 4:00 PM
  • check out time: 11:00 AM
  • small refrigerators in each guest room
  • microwave in Family Room
  • multiple restaurants on property
  • lawn games on property at Pegasus Lawn
  • discounted self-parking:  $18 daily
  • outdoor pool
  • fitness center
  • no additional resort fees for access to pool and fitness center
  • 10% discount at Makara Spa and Salon on property
  • free Wifi in guestrooms

groceries nearby:

pharmacy nearby:

closest hospitals: 

Hospitals and Pharmacies

local childcare/sitters: 

wheelchair and stroller rentals: 

things to do in Dallas:

transportation and travel information: