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.
We have a group for parents and caregivers where we will return to meeting monthly in January of 2023. Once a quarter we will feature a guest speaker and the other meetings will provide an opportunity to socialize, ask questions, and find and give support.
A group for the Hispanic Community (conducted in Spanish) will meet quarterly and include a mix of topics, speakers, and social time.
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.
Dana will also begin hosting a monthly group for tweens and younger teens with Glut1 Deficiency - the Glut1 Super Heroes. It will include some short structured activities along with time for socializing, support, and building friendships.
The Glut1 Pals (for children with Glut1 Deficiency) will meet quarterly for social time and special activities with Glut1 moms Maria Rebbecchi and Erin Meisner.
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.
Adults with Glut1 Deficiency
1:00 PM Eastern
Joint meeting with the Super Heroes!
Tweens and Teens with Glut1 Deficiency
1:00 PM Eastern
Joint meeting with the Overcomers!
Next meeting in January TBD - please check back!
Topics: The Glut1 Deficiency Natural History Study - the critical role you can play in making sure your loved one is included in the big picture of Glut1 Deficiency experiences and how important it is for research.
Next meeting in January, TBD - please check back!
Topics: The Glut1 Deficiency Natural History Study - the critical role you can play in making sure your loved on is included in the big picture of Glut1 Deficiency experiences and how important it is for research.
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.
The Glut1 Deficiency community is like a family. Rely on one another for support, encouragement, understanding, and wisdom.
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.
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.
Sign up for the Family Network to receive the meeting announcements and other important news.