Conference Agenda

Conference
Agenda

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Wednesday, July 10

4:00-6:00 PM
6:00-9:00 PM

Registration
Red Carpet Event

unique social event to kick off the conference
patients will be introduced and spotlighted with a brief story as they walk the red carpet
music and dance party afterward
souvenir photo booth
Kona Ice keto friendly refreshments

Thursday, July 11

7:30-8:30 AM

8:00 AM-5:30 PM

Registration
Buffet Breakfast

Exhibits and Children's Activity Room Open
Special Sibling and Patient Activities 1:00-4:30
Special guests: Ferrets and Friends
Capital Music Therapy Services

NEW INSIGHTS

8:30-9:00 AM
9:00-9:30 AM
9:30-10:00 AM

10:00-10:30 AM

10:30-11:00 AM
11:00-11:30 AM
11:30-11:45 AM

11:45AM-1:00 PM

Opening Welcome
Past, Present, and Future
Registry and Research

BREAK

Consensus Work and Global Updates
Natural History and New Challenges Uncovered
Update on METAglut1 blood test development for the
timely diagnosis of GLUT1 DS

LUNCH AND GROUP PHOTO

Glut1 Deficiency Foundation
Dr. Darryl De Vivo
Dr. Juan Pascual

BREAK

Dr. Jörg Klepper
Dr. Michèl Willemsen
Dr. Vincent Petit

LUNCH AND PHOTO

SYMPTOMS AND TREATMENTS

1:00-1:30 PM
1:30-2:00 PM
2:00-2:30 PM

2:30-2:45 PM

2:45-3:15 PM
3:15-3:45 PM
3:45-4:30 PM

Movement Disorders in Glut1 Deficiency
Seizures in Glut1 Deficiency
Cognitive Considerations in Glut1 Deficiency

BREAK

Other Symptoms in Glut1 Deficiency
Glut1 Deficiency in Adulthood
Treatments
Overview
Anticonvulsants
Gene Therapy

Dr. Toni Pearson
Dr. Stéphane Auvin
Dr. Veronica Hinton

BREAK

Dr. Juan Pascual
Dr. Mackenzie Cervenka

Dr. Jörg Klepper
Dr. Nicole Heussinger
Dr. Smitha Jagadish

POSTER SESSION AND EXHIBITS

4:30-5:30 PM

Cooking, Sampling, Visiting Booths
Scientific Poster Session

DINNER ON YOUR OWN

SOCIAL EVENT
7:30-8:30 PM

Special Guests: Koo Koo Kanga Roo
music and movement with the whole family
keto snacks

Friday, July 12

7:30-8:30 AM

8:00 AM-5:30 PM

Registration
Buffet Breakfast

Exhibits and Children's Activity Room Open
Special Activities 2:30-4:30

KETOGENIC DIETS

8:30-9:15 AM

9:15-10:00 AM

10:00-10:30 AM

Ketogenic Diets in Childhood
Ketogenic Diets in Adulthood

Best Practices and Fine Tuning in Ketogenic Diets
Influences on Ketosis

BREAK

Dr. Eric Kossoff
Dr. Mackenzie Cervenka

Wesley Lowman, RDN, LDN
Dr. Dominic D'Agostino

BREAK

WORKSHOP SESSIONS

10:30 AM-12:00 NOON

CHOOSE ONE SESSION FROM BELOW

KETO SESSION
Simple and Sustainable Keto
   Dawn Martenz
Keto Kitchen Tips
   Maria Rebbecchi
Keto Independence
   Leslie Holleman
Feeding Tube Tips
Kelly Jones
Q & A Session
Moderator: Dr. Dominic D'Agostino

NEW FAMILIES SESSION
Glut1 101
Dr. Darryl De Vivo
Learning Strategies
Dr. Veronica Hinton
Therapy Strategies
Rachel Salazar
Family Advocacy
Erin Meisner
Q & A Session
Moderator: April York

TEEN AND ADULT PATIENT AND PARENT SESSION
Survey Insights
   Dr. Mackenzie Cervenka
Registry Insights
   Dr. Juan Pascual
Identifying and Meeting Needs
   Open Discussions
Q & A Session
Moderator: Kris Engelstad

12:00-1:00 PM

LUNCH

RESEARCH ROUNDUP

1:00-2:15 PM

2:15-2:30 PM

Research Updates and Panel Discussion
NIH Programs
Genes
Ketone Esters
New Ideas
CBD Oil for Seizures
Moderator: Dr. Tom Rebbecchi

BREAK

Dr. Adam Hartman
Dr. Umrao Monani
Dr. Dominic D'Agostino
Dr. Juan Pascual
Dr. Karthik Rajasekaran

BREAK

1:00-2:00 Sibling Session

FOCUS SESSIONS

2:30-4:30 PM

CHOOSE ONE SESSION FROM BELOW

PATIENT SESSION (teens and adults)

School and Vocational Experiences: Jennifer Fitzhugh
Self-Care: Leslie Holleman
Medical and Genetic Discussions: Kris Engelstad
Independence & Socialization: Dana Pottschmidt
Q & A Session
Moderators: Kris Engelstad and Leslie Holleman

PARENT SESSION

Social Security, Benefits, Waivers: Stacy Cloyd
ABLE Accounts: Nicholas Hancart
Special Needs Trusts: Kelly Thompson
School and Vocational Experiences: Jennifer Fitzhugh
Fostering Independence: Dana Pottschmidt
Caregiver and Sibling Support: Lauren Furtner, Holly Senn
Q & A Session
Moderators: Rob Rapaport and Jason Meyers

PROFESSIONAL SESSION
Roundtable Discussions:

Consensus Paper
Research and the Registry
Best Practice Diet Guidelines
Adult Centered Needs
Treatment Challenges and Shortfalls
Diagnostic Challenges
Greatest Research Needs
Next Steps
Moderators: Dr. Jörg Klepper and Dr. Juan Pascual

CHILDREN'S SESSION
Special Entertainment and Structured Activities

located in the children's activity room
ideal for younger patients and siblings
supervision required
special guests and activities planned
Mr. Bond's Science Guys
Coordinator: Sherri Pergrem
Volunteers: Madi Stoddard, Iris Rebbecchi, Ashton York, Scott Meyers, Chantal Sanchez