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.
Our quarterly meetings for parents are offered in both English and Spanish, and they include research updates, educational content, guest speakers, and social time at each gathering.
The Overcomers (for adults with Glut1 Deficiency) will continue to meet monthly, hosted by Dana Pottschmidt. She's a licensed social worker and behavioral consultant and works with people with developmental disabilities to increase independent living and social skills. Overcomers gatherings will be a mix of skill building, support, and social time.
The Glut1 Pals (for children with Glut1 Deficiency) will meet quarterly for social time and special activities.
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.
Our quarterly meetings for parents are offered in both English and Spanish, and they include research updates, educational content, guest speakers, and social time at each gathering.
The Overcomers (for adults with Glut1 Deficiency) will continue to meet monthly, hosted by Dana Pottschmidt. She's a licensed social worker and behavioral consultant and works with people with developmental disabilities to increase independent living and social skills. Overcomers gatherings will be a mix of skill building, support, and social time.
The Glut1 Pals (for children with Glut1 Deficiency) will meet quarterly for social time and special activities.
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.
Monthly Gathering:
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The Glut1 Overcomers meet monthly, typically on the 2nd Sunday of the month at 1:00 PM Eastern.
Please email Glenna Steele or Dana Pottschmidt to get put on the mailing list for the Glut1 Overcomers to receive notices about future meetings with registration links. July Meeting Registration Link |
Quarterly Gatherings:
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Saturday, April 23, 2022
11:00 AM Eastern Topics: The Genetics of Glut1 Deficiency Special Guest: Kris Engelstad - genetic counselor and research coordinator at Columbia University Medical Center register here |
Saturday, May 7, 2022
11:00 AM Eastern Topics: Research Insights Special Guest: Prof. L. Felipe Barros Centro de Estudios Científicos, Chile register here |
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Saturday, April 30, 2022
11:30 AM Eastern Topic: Come share your talent or hobby! All are welcome to shine and share with friends - be it a song, exercise or dance move, art piece, special collection, picture or short video of what you enjoy! 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.
