Glut1 Deficiency Foundation
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Glut1 Virtual Community Gatherings

We have developed a program to provide opportunities for members of our community to meet up with others no matter where we live!  These virtual gatherings will give us social time to get to know one another better and offer support and encouragement, and we will also have some sessions that are more educational in nature with topics and guest speakers.  

We will be using the Zoom platform, and we recognize the many wonderful possibilities it provides.  We will also be putting some practices in place to help ensure patient privacy and a secure Zoom experience, including not allowing any recordings of the gatherings.  Pre-registrations will be required, and as an extra layer of security, you'll need to be part of our 
Family Network in order to participate.  Meeting announcements and registration links will be shared each month through the Family Network, and any Glut1 Deficiency patient or family from any location is welcomed and encouraged to join.

April Zoom Meetings

Parent Group:  any age  
Saturday, April 24th
11:00 AM Eastern US
Topic:  managing emergency medical care for Glut1 Deficiency patients - Tom & Maria Rebbecchi
​
​Leaders:  Rob Rapaport and Glenna Steele
Parent Zoom Registration

Comunidad Hispana:   all ages
Saturday, April 10th
11:00 AM Eastern US
​Topic:  resources and programs
​
​Leaders:  Chantal Sanchez and Sandra Ojeda
Comunidad Hispana Registration
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Children with Glut1 Deficiency
Saturday, April 24th
1:00 PM Eastern US
Topic:  social time
​
​Leaders:  Erin Meisner and Maria Rebbecchi     ​
Child Zoom Registration

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Adults with Glut1 Deficiency
Sunday, April 11th 
​1:00 PM Eastern US
Topic:  social time
Leaders: Leslie Holleman and Dana Pottschmidt
Adult Zoom Registration

Meeting Groups:

We realize there is a great deal of variability among our patients in terms of developmental levels, which don't always match  actual age.  The patient age groups are guidelines, but please feel free to have your loved one with Glut1 join the group that is the best overall fit.

If there are speech and communication challenges, please feel free to use assistive devices or encourage the use of the chat function if that is helpful for easier participation. 
​
Parents are encouraged to allow their children to participate independently once everyone is familiar and feels comfortable with the meetings, but parents or siblings are welcomed to participate with your loved one with Glut1 if you need to help facilitate involvement and communication.

Meeting times have been chosen to try to accommodate as many time zones as possible. Group leaders may experiment with alternating times from month to month to try to give opportunities to attend to as many as possible.  The parent groups in both English and Spanish will be a mix of social and informational gatherings, sometimes with special topics or guest speakers.


Community Guidelines:

RELY:
The Glut1 Deficiency community is like a family.  Rely on one another for support, encouragement, understanding, and wisdom.

RESPECT:  
We respectfully ask you to remember that every situation is unique, and what is right for you and your family might not be for another.  We expect everyone to extend compassion, inclusiveness, and acceptance to each other, not judgment.  Use respectful language and please be kind. 

REFRAIN:  
We also want everyone to remember that these gatherings are for sharing experiences and information, but please refrain from offering any type of medical advice.


Be sure to sign up for the Family Network to receive the monthly meeting announcements with links for registration.

Family Network Signup

Resources from our Glut1 Gatherings

Q&A with Professor Dr. Jörg Klepper (also in Spanish)

Join OUr Networks

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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 >
      • Resource List
      • Videos
      • Cognition and Learning
      • Family Recommended Specialists
      • COVID-19
      • Patient Stories >
        • Stories
        • 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
    • CZI Rare As One
    • Foundation Newsletters >
      • Spring 2021
      • Winter 2021
      • 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 Scientific and Family Conferences
    • 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 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate