Glut1 Deficiency Foundation
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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
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

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
8:30 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 8:30 AM
  • depart US Captiol to return to hotel at 1:00 PM
  • tours arranged by Senator Rand Paul's office
  • ticketed event
  • list of prohibited items and exceptions
  • etiquette

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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
​
Contact Us

​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • Share Your Story
      • Materiales en Español
    • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • Conferences
    • 2021 Conference - San Diego
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate