2026 GLUT1 Deficiency Foundation

Scientific and Family Summit

Summit Program

The agenda overview for the GLUT1 Deficiency Summit can be found below so you can have an idea of what to expect for the program. A confirmed speaker list is also included.

A more detailed agenda is available here in a Google spreadsheet, with different days featured in tabs along the bottom. Please keep in mind the agendas are a work in progress and may change as planning moves along.

SUNDAY, JULY 12

EARLY ARRIVALS

12:00-2:00 meet Dana to help host the July GLUT1 Gatherings on location | tweens & teens (Super Heroes) and adults (Overcomers)

Summit Day 1:

MONDAY, JULY 13

REGISTRATION OPENS 10:00 AM

AFTERNOON ACTIVITIES: 2:00-6:00 PM

resource fair and exhibits
family photos
family fun - games, crafts, and activity stations
therapy dogs
interactive cooking & kitchen tips
natural history study and registry enrollment
research project participation
1:1 sessions with genetic counselor | bring your report
Kona Ice truck | 2:00-4:00

Special Interest Meetings and Activities:

2:00-3:00 Genetics 101 session for families | Dr. Rodrigo Starosta
3:00-4:00 GLUT1 101 session for new families | Cari Reeves, Dr. Jörg Klepper, Dr. Eric Kossoff, Dr. Sandra Ojeda, Dana Pottschmidt
4:00-5:00 GLUT1 session for dads | Brad Thompson, John Steele, Matt Jones
5:00-6:00 Therapy 101 session for families: making sense of treatment options | Dr. Jörg Klepper, Dr. Juan Pascual, Dr. Umrao Monani, Dr. Casey Vickstrom
5:00-6:00 clinical and scientific work group session

WELCOME AND DINNER: 6:00-8:00 PM

food stations | menu to be announced

SOCIAL OPTIONS

11:30-1:30 lunch with Dana | tweens/teens/adults with GLUT1 Deficiency - location TBD

Summit Day 2:

TUESDAY, JULY 14

SESSIONS: 8:00 AM - 5:45 PM

disease overview and patient experiences | Dr. Jörg Klepper, Dr. Sandra Ojeda
interactive focus session - cognition | Dr. Valentina De Giorgis and Dr. Becky Olson
interactive focus session - speech and language | Dr. Ruth Braden and Dr. Vikram Jakkamsetti
interactive focus session - movements | Dr. Toni Pearson and Dr. Valentina De Giorgis
interactive focus session - seizures | Dr. Juan Pascual
interactive focus session - ketogenic diets | Dr. Eric Kossoff and Dr. Marisa Armeno
interactive focus session - therapy/treatment roundup | Dr. Paul Thornton and Dr. Rodrigo Starosta
G1DF research and clinical care initiatives | Dr. Sandra Ojeda, Glenna Steele

DINNER ON YOUR OWN - EXPLORE DOWNTOWN ASHEVILLE

SOCIAL OPTIONS:

10:00-10:30 Disney Music Bingo | with Dana
10:30-11:15 Marvel Battle | with Dana
11:15-12:00 Jeopardy | with Dana
2:00-3:00 Asheville Rhythm | activity room
4:00-6:00 Asheville Pinball Museum | outing for teens and adults
8:00-9:00 meet up at the hotel pool | informal, no supervision
8:00-9:00 meet up in the activity room | games and social time - pajamas welcome!
8:00-? movie night | Richie Rich (filmed at the Biltmore) - pajamas welcome!

Summit Day 3:

WEDNESDAY, JULY 15

SESSIONS: 8:00 AM - 5:30 PM

FAMILY TRACK SESSIONS:

interactive focus session - adulthood | Dr. Mackenzie Cervenka, Dr. Elizabeth Felton, Kelly Faltersack
interactive focus session - social support | Dana Pottschmidt
interactive focus session - future planning: care binders, financial, legal | Dana Pottschmidt, Glenna Steele
interactive focus session - family support: siblings, spouses, caregivers | Jacqueline Kerrigan, Meredith & Julius Austin, Brad Thompson, Dr. Marjorie Caro
research and clinical initiative updates | GLUT1 Deficiency Foundation
ask the experts panels | patients, siblings, caregivers
scientific session summary | TBD

SCIENTIFIC TRACK SESSIONS:

clinical day summary - focusing needs | Dr. Jörg Klepper
patient burdens and research priorities | Dr. Sandra Ojeda
GLUT1 & brain metabolism focus session | Dr. Caroline Pearson, Dr. Mark Beenhakker, Dr. Robin Williams
GLUT1 & glycosylation focus session | Dr. Matt Gentry, Dr. Hudson Freeze
clinical research focus session | Dr. Mattia Bonzanni, Dr. Carlo Alberta Quaranta, Dr. Juan Pascual
therapy development focus session | Dr. Mariana Bollo, Dr. Casey Vickstrom, Dr. Umrao Monani, Dr. Pierre Magistretti, Dr. Vincent Petit, Lundbeck
work group updates
flash talk session | Dr. Roba El Zibaoui, Dr. Soumalya Chakraborty, Dr. Obada Albaghdadi, Dr. Jacob Awkal, Gauri Kathote, Dr. Shin Nabatame

CLOSING DINNER AND DANCE 6:30-9:30 PM

Battery Park Hall | historic downtown Asheville
walk or private reserved trolley service | .4 miles from Embassy Suites
meal | Black Bear BBQ
band | The Bridge Brothers