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.
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
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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 Comunidad Hispana: all ages
Saturday, April 10th 11:00 AM Eastern US Topic: resources and programs Leaders: Chantal Sanchez and Sandra Ojeda |
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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 |
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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 |
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.
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.
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.
