GLUT1 Gatherings
Our GLUT1 Gatherings offer a virtual support program to provide opportunities for members of our community to meet up with others no matter where we live! These gatherings will provide us opportunities to support, educate, and encourage one another.
The meetings are hosted by Dana Pottschmidt, the G1DF's Program Director.
Parents and Caregivers:
This group meets regularly as a chance to have some deep dives into topics of interest to the group, to socialize, ask questions of each other, and find and give support.
Hispanic Community:
This is a joint effort with advocates in Spain and North and South America. The group meet every other month and will have announcements for special focus and activities around their meetings.
The Overcomers:
This group is for adults with GLUT1 Deficiency as an opportunity to socialize, build connections, ask and answer questions, and give and get support. Meetings are scheduled for one hour.
The Super Heroes:
This group is for tweens and teens and it meets monthly for 45 minutes. These meetings are an opportunity to meet others with GLUT1 Deficiency, share some social time, play games, and give and get support.
As an extra layer of security to protect patient and family privacy, you'll need to be part of our Family Network in order to participate.
Meeting announcements and registration links will be shared with the Family Network by email and through the private GLUT1 Community Connect Facebook Group. Any GLUT1 Deficiency patient or family member from any location is welcomed and encouraged to join.
Monthly GLUT1 gatherings:
Please check the events calendar for meeting dates and details:
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.
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.
Stay connected.
Sign up for the Family Network to receive the meeting announcements and other important news.