Glut1 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.
We have a monthly group for parents and caregivers as a chance to socialize, ask questions, and find and give support. Once a quarter we will feature a topic and guest speaker.
A group for the Hispanic Community (conducted in Spanish) follows the same routine as the parent/caregiver group with topics once a quarter and the rest of the gatherings as open opportunity to visit, ask questions, and give and get support.
The Overcomers (for adults with Glut1 Deficiency) meets 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 also hosts 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.
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 member from any location is welcomed and encouraged to join.
Monthly Gatherings
Parent and Caregiver Group
Leaders: Rob Rapaport and Glenna Steele
Next meeting: Saturday, November 18th
11:00 AM Eastern (New York City)
Topic: join us for social time and support - come with questions and topics!
Comunidad Hispana
Leaders: Chantal Sanchez and Sandra Ojeda (in Spanish)
Next meeting: Saturday, November 11th
11:00 AM Eastern (New York City)
Topics: join us for social time and support - come with questions and topics!
Tweens and Teens with Glut1 Deficiency
Leaders: Dana Pottschmidt and Maddison Hall
Next meeting: Sunday, November 12th
12:00 PM Eastern (New York City)
Topic: social time
Adults with Glut1 Deficiency
Leaders: Dana Pottschmidt
Next meeting: Sunday, November 12th
1:00 PM Eastern (New York City)
Topic: social time
Please email Glenna Steele or Dana Pottschmidt to get put on the mailing list for the Overcomers to receive notices about future meetings with registration links.
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.