Preliminary
Conference 
Agenda

last updated May 14th
subject to change

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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
Overview of Ketogenic Diets in Glut1 Deficiency
Ketogenic Diets in Adulthood
​
Best Practices and Fine Tuning in Ketogenic Diets
​Influences on Ketosis

BREAK
Dr. Erick 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
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:  Eric Ochmanek
  • 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
CLOSING SESSION
4:30-5:00 PM
Closing Session
  • Patient Panel
  • Closing Remarks
  • Announce 9th Biennial Conference on Glut1 Deficiency - 2021
DINNER ON YOUR OWN
SOCIAL EVENT
6:30-10:00 PM
Twilight Monument Tour
  • chartered bus transportation
  • several stops along the tour to explore the monuments
  • ​hotel pickup and dropoff
  • ticketed event (purchased separately)

Saturday, July 13

SOCIAL EVENT
9:00 AM - 1:00 PM
United States Capitol Building Guided Tour
  • chartered bus transportation to the US Capitol
  • hotel pickup and dropoff
  • 30 minutes for security screening process
  • 15 minute group video
  • 45 minute guided group tour
  • extra time to explore grounds, cafeteria, gift shop
  • wheelchairs available to borrow (photo ID required)
  • fully accessible tour route and surrounding grounds
  • actual tour start times in two groups - 10:10 AM and 10:20 AM
  • depart hotel at 9:00 AM
  • depart US Captiol to return to hotel at 1:00 PM
  • tours arranged by Senator Rand Paul's office
  • ticketed event