2024

Glut1 Deficiency Summit

Summit Agenda

We are sharing the preliminary agenda for the 2024 Glut1 Deficiency Summit in Dallas below. Speaker names in bold are confirmed. Topics listed are general in nature and will be updated with specific presentation titles as planning moves along.

We'll continue to update this page with more details as plans are finalized, and please keep in mind there may be slight changes.

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scientific

WEDNESDAY, JUNE 26
Omni Dallas Downtown

 Opening Lunch

AFTERNOON GENERAL SESSIONS: Lightning Talks

Team Science Collaborations

New Method Collaborations

Poster Session and Reception

scientific

THURSDAY, JUNE 27
Omni Dallas Downtown

GENERAL SESSIONS:

Electrophysiology

Glut1 and SLC2A1

Brain Metabolism

Therapy Development

Closing and Next Steps

Summit Social - science, clinical, family attendees

clinical

FRIDAY, JUNE 28
Omni Dallas Downtown

GENERAL SESSIONS:

Overview and Symptoms

Patient Experiences

Treatments

BREAKOUT SESSIONS:

Deep Dive:  Ketogenic Diets
Jong Rho, MD
Marisa Armeno, MD
Victoria Whitely, RD

  • diet viersions
  • infancy and breastfeeding
  • supplements and labs
  • managing triggers & obstacles
  • compliance
  • care coordination
  • decisions to make

Deep Dive:  Puberty and Adulthood
Mackenzie Cervenka, MD
Elizabeth Felton, MD, PhD
Kelly Faltersack, RD

  • hormones
  • long term keto
  • best practices
  • care coordination
  • transitions
  • independence and support
  • pregnancy

Deep Dive:  Treatment Horizons
Juan Pascual MD, PhD:
Prof. Dr. Jörg Klepper
Prof. Dr. Michél Willemsen

  • triheptanoin (C7) and MCT's
  • GliaPharm
  • gene therapy
  • movement medications
  • seizure medications
  • other treatments
  • decisions to make

GENERAL SESSIONS:

  • Patient Panel:  Ask Me Anything
  • Closing


Evening Social

 

family

SATURDAY, JUNE 29
Omni Dallas Downtown

GENERAL SESSIONS:

Summit Snapshots

Perspectives

Support

BREAKOUT SESSIONS:

Deep Dive #1:  promoting teamwork at school: IEP, 504, advocacy, support
Deep Dive #2:  fostering independence and preparing for adulthood
Deep Dive #3:  social relationships and challenges with Glut1 across the ages
Deep Dive #4:  all-star chefs cook along with diet tips, tricks, recipes, kitchen hacks
Deep Dive #5:  PCORI Research Ready Series research fundamentals training

Additional Sessions:

  • Special SibShop sessions for siblings of all ages
  • Special sessions for teens and adults with Dana Pottschmidt
  • Special activities for patients and siblings of all ages on both Clinical and Family days

GENERAL SESSIONS:

  • Recaps from Breakouts
  • Closing

Evening Social

check back for more details as planning moves along!