Glut1 Virtual Community Gatherings
Our Zoom program provides opportunities for members of our community to meet up with others no matter where we live! These gatherings will provide us opportunities to meet, share, learn, and support one another.
As the pandemic restrictions begin to lift in most parts of the world and families begin to return to more normal schedules, we have decided to shift our schedule as well and move from monthly Zooms to quarterly for most of the groups. We plan to offer research updates, educational content, guest speakers, and social time at each gathering, and the meeting time length will be extended slightly.
Pre-registrations will still 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 through the Family Network, and any Glut1 Deficiency patient or family from any location is welcomed and encouraged to join.
As the pandemic restrictions begin to lift in most parts of the world and families begin to return to more normal schedules, we have decided to shift our schedule as well and move from monthly Zooms to quarterly for most of the groups. We plan to offer research updates, educational content, guest speakers, and social time at each gathering, and the meeting time length will be extended slightly.
Pre-registrations will still 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 through the Family Network, and any Glut1 Deficiency patient or family from any location is welcomed and encouraged to join.
Winter Zoom Meeting Groups
|
Saturday, January 29, 2022
11:00 AM Eastern Topics: Disability Inclusion Special Guest: Kyann Flint from Wandke Consulting register here |
Saturday, January 29, 2022
1:00 PM Eastern Topics: Speech and Language Strategies Special Guest: Lastenia Cornejo, Speech Therapist register here |
|
|
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.
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.
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.
