2024

Attendee Information

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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.

venue and guest room reservations:

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

  • The Omni in downtown Dallas will be the venue for the Glut1 Deficiency Summit
  • Our discount room block at the Omni closed on May 11th, but room reservations may still be available based on the hotel's prevailing rate.

Guest Weekly Welcome Letter from the Omni - restaurant, pool, and spa hours plus special events

Patient and Family Inspired Spotify Playlist: Glut1 Summit Music

All meeting activities will take place in the Trinity Ballroom area on the third floor of the Omni.

Self-parking and valet are both available. The self-parking garage has elevators conveniently located that give access to the ballroom areas.

meals and menus:

Menus for both breakfast and lunch each day are shared below to help you plan. No food will be served at socials.

Each meal will have some keto-friendly options that can be worked into a meal plan, but there will also be foods that are not ketogenic.

There are some microwaves available that can be requested with your room reservation, and we'll provide one in the Family Room on Friday and Saturday.

Wednesday Lunch:

  • asparagus salad | field greens
  • herb seared chicken | slow roasted salmon
  • creamed leeks
  • roasted root vegetables | fingerling potatoes
  • chocolate bread pudding | strawberry panna cotta | assorted berries
  • fats: butter | olive oil | mayonnaise | ranch dressing
  • coffee | tea | water

Wednesday Poster Reception:

  • artisan cheeses | toasted nuts | dried fruits | gourmet breads | crackers | preserves | honey
  • cash bar with assorted drinks (1 ticket per attendee)

Thursday | Friday | Saturday Breakfast:

  • fruit | berries
  • oatmeal | brown sugar | pecans | raisins
  • scrambled eggs
  • sausage | bacon
  • breakfast muffins
  • fats: butter | olive oil | mayonnaise | ranch dressing
  • coffee | hot tea | orange, cranberry, grapefruit juices

Thursday Lunch:

  • chicken tortilla soup
  • field greens salad
  • vegetarian enchilada suiza
  • marinated beef and chicken fajitas
  • tortillas | tortilla chips | cheeses | sour cream | salsa | salsa verde | guacamole
  • southwestern rice | borracho beans
  • Mexican chocolate cake | sopapilla cheesecake pie | assorted berries
  • fats: butter | olive oil | mayonnaise | ranch dressing
  • coffee | tea | water

Friday Lunch:

  • cobb salad: chicken | blue cheese crumbles | bacon | tomato | egg | cucumber | green goddess dressing
  • fruit salad
  • turkey sandwich | Swiss cheese | bacon | avocado | tomatoes | sourdough bread
  • honey mustard chicken sandwich | lettuce | tomato | arugula | feta cheese | ciabatta
  • turkey | chicken | Swiss cheese | feta cheese | bacon
  • strawberry shortcake | fruit tart | chocolate pecan tart | assorted berries
  • fats: butter | olive oil | mayonnaise | ranch dressing
  • coffee | tea | water

Saturday Lunch:

  • mixed greens salad | smoked bacon mac and cheese salad
  • beef medallions | grilled mahi mahi
  • vegetable couscous | confit new potatoes
  • fresh vegetable sauté
  • Texas sheet cake | chocolate peanut butter pie | assorted berries
  • fats: butter | olive oil | mayonnaise | ranch dressing
  • coffee | tea | water

There are several restaurants on property for evening meal options.

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 (see tentative schedule below)
  • 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

TENTATIVE SPECIAL GUEST ACTIVITIES SCHEDULE:

Friday 28th

10:00-11:00 Perot Museum Super Hero Science
11:00-12:00 KidLinks music therapy
2:00-3:00 Will Baffle magician
3:30-5:00 Sibshops with Jess Kruger
4:45-5:30 Adult Session with Dr. Cervenka, Dr. Felton, Kelly Faltersack, and Dana Pottschmidt: informal discussions, Q&A, open only to people with Glut1 Deficiency

Saturday 29th

10:00-11:00 Story Time with Sharen Pearson
11:00-12:00 KidLinks music therapy
2:00-3:00 Mad Science
3:30-4:30 dog therapy visit
7:00-9:00 Teen/Adult hangout:  Game Show Social

socials:

Thursday, June 27th: 
Opening Social
7:00-9:00 PM

  • DJ, dancing, games, photo booth, and socializing
  • no food served
  • western/rodeo dress for fun (prizes awarded) or dress for comfort!
  • a cowboy/cowgirl hat and hat bar for decorating and embellishment will be provided for people with Glut1 Deficiency and their siblings

    *we'll have a 360 video booth and the song playing will be Brave by Sara Bareilles - the video is here if you want to practice your dance moves!

Friday, June 28th: 
Karaoke Sing Along
7:00-9:00 PM

  • Karaoke DJ
  • no food served
  • dress as your favorite musician/performer (prizes awarded) or just dress for comfort!

Auri's Dance Party
7:00-8:00 PM

  • dance party for the young ones with Sharen Pearson
  • no food served

Saturday, June 29th: 
Open Social
7:00-9:00 PM

  • time to continue connecting with others:  family game room, pool, Pegasus Lawn games (outdoor), or on your own in one of the many public common spaces in the hotel
  • no food served
  • teen/adult patient hangout with Dana - Game Show Social

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 for the walking portions that participants wear shorts (so knees are visible) and short sleeved shirts (so elbows are visible)

Study Schedule for the walking and water pouring portions:

  • Thursday:  7:30am – 5:00pm
  • Friday:  7:30am – 7:00pm
  • Saturday: 7:30am – 5:00 pm

Study Schedule for the blood collection:

  • Thursday:  9:00am – 3:00pm    1 phlebotomist
  • Friday: 8:00am – 5:00pm    2 phlebotomists
  • Saturday: 8:00am – 5:00pm   2 phlebotomists

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

 

Study Schedule for fNIRS:

  • Wednesday:  9:00am - 5:00 pm

exhibitors:

Nutricia/KetoCal
KetoVie/Cambrooke
Functional Formularies
Keto Hope Foundation
Marjorie Caro Designs
Glut1 Deficiency 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
Omni program map

local childcare/sitters: 

wheelchair and stroller rentals: 

things to do in Dallas:

transportation and travel information: