2021 Virtual Family Conference

 We are planning a unique experience for our virtual family gathering in July!  We plan three days of gathering to feature expert presentations, small group breakouts, and fun social events for the whole family.  We have been using our community survey to identify concerns and gaps and have planned conference topics and sessions to help better meet those needs. Conference days and times have been chosen to help promote easier participation from families no matter where they live.  

We hope to see you join us to meet, share, and learn...virtually!

REGISTRATION FEE:  $25
Expert and Breakout Sessions will have Spanish translations available.
Recordings are planned for Expert and Breakout Sessions and will be made available to registered attendees once the meeting concludes and recordings are edited.
Registration will close the day the conference starts.
Preliminary Agenda

Friday, July 23rd
12:00 Noon to 3:15 PM EST

Expert Sessions  12:00-1:00
  • Darryl De Vivo, MD:  30 Years of Glut1 Deficiency
  • Prof. Dr. Jörg Klepper:  Clinical Consensus Guidelines
  • Sandra Ojeda, PhD:  Scientific Meeting Summary
  • Q&A

Break 1:00-1:15

Special Topic Breakout Session Choices  1:15-2:00
Session 1:  Newly Diagnosed - Advice for the Journey
                    Darryl De Vivo, MD and Maria Rebbecchi
Session 2:  Preparing for Puberty and Adulthood
                     Elizabeth Felton, MD, PhD and Kelly Faltersack, MS, RD, LD, CD
Session 3:  Clinical Trials 101, Understanding Outcome Measures and Biomarkers
                     Adrian Avila and Terry Jo Bichell, PhD

Break 2:00-2:15

Social Time:  2:15-3:00
Virtual Cook-Along with Dawn Martenz - The Charlie Foundation

Sponsor Spotlight:  3:00-3:15
The Charlie Foundation
Saturday, July 24th
12:00 Noon to 3:15 PM EST

Expert Sessions  12:00-1:00
  • Eric Kossoff, MD:   100 Years of Medical Ketogenic Diets
  • Beth Zupec-Kania, RDN, CD:  Ketogenic Dietary Therapy Best Practices for Glut1 Deficiency
  • Q&A

Break 1:00-1:15

Special Topic Breakout Session Choices  1:15-2:00
Session 1:   Nurturing Keto Independence
                     Leslie Holleman and Dana Pottschmidt
Session 2:  Resources and Support (ARC Programs and Services; Future Planning Now)
                      Leann & Garon Mosby and Glenna Steele
Session 3:  Supporting the Siblings
                      Holly Senn, BS, CCLS

Break 2:00-2:15

Social Time:  2:15-3:00
Virtual Family Game Night

Sponsor Spotlight:  3:00-3:15
KetoVie
Sunday, July 25th
12:00 Noon to 3:15 PM EST

Expert Sessions  12:00-1:00
  • Juan Pascual, MD, PhD:  Hope on the Horizon
  • Glenna Steele:  Glut1 Deficiency Collective Voices Project
  • Q&A

Break 1:00-1:15

Special Topic Breakout Session Choices  1:15-2:00
Session 1:  Advocacy and Teamwork at School
                    Heather Parrish and Dia Gaur
Session 2:  Advocacy and Teamwork in Medical Care
                     Kathy Davis, MD and Rachel Finn
Session 3:  Glut1 Genetics
                     Kris Engelstad MS, CGC and Ran Naot

Break 2:00-2:15

Social Time:  2:15-3:00
Virtual Magic Show - Gary Ferrar

Sponsor Spotlight:  3:00-3:15
Nutricia KetoCal

Meeting Sponsors