2024

Glut1 Deficiency Summit

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We are already excited about our next biennial gathering of the entire stakeholder community at our Glut1 Deficiency Summit! We have special sessions planned to build relationships, foster collaborations, and create community while focusing on how to better meet the needs of patients and families.

The goals of our gathering:

  • improve patient care
  • support, connect, and empower the patient and family community
  • give patients a voice in the research process
  • share key research updates
  • identify critical gaps and strategies to address them
  • foster collaborations across related research areas
  • attract and inspire new researchers and disease specialists
  • engage all stakeholder groups to drive research progress
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:

  • 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.

Conference Venue and Guest Room Reservations:

  • 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.

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
  • 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 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]

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. Sessions will take place on Wednesday, June 26th 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

information links

2022 highlight reel

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Summit supporters:

CHARLIE LOGO HORIZONTAL

visitor information:

check back for more details as planning moves along!