Zoom Glut1 Gatherings-2

Glut1 Gatherings

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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 two monthly groups for parents and caregivers as a chance to socialize, ask questions, and find and give support. One is for parents/caregivers of children of all ages and one is for parents/caregivers with adult children.  The all ages group will have a guest speaker once a quarter, and the rest of the sessions will be open discussion.

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 Glut1 Gatherings

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Parent and Caregiver Group - All Ages
1

​​​Leaders: Glenna Steele

Moving to the 2nd Saturday of the month.

Next meeting:  Saturday, June 8th
11:00 AM EST (New York City)

Topic: new Facebook group launch, Q&A, open discussion

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Parent and Caregiver Group - To Adults
2

​​​Leaders: Rob Rapaport

Typically the last Sunday of the month.

Next meeting:  Sunday, June 23
7:00 PM (New York City)

Topic: open discussion Q&A, social time

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Comunidad Hispana
3

​​​Leaders: Chantal Sanchez and Sandra Ojeda (in Spanish)

Typically the 2nd Saturday of the month.

Next meeting:  Saturday, June 8th
11:00 AM Eastern (New York City)

Topic: open discussion Q&A, social time

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Tweens and Teens with Glut1 Deficiency
4

​​​​​Leader: Dana Pottschmidt

Next meeting:  Sunday, June 9th at 12:00 PM (noon) Eastern

Topic:  social time

2024 Dates:
June 9
July 14
August 11
September 8
October 13
November 10
December 8
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Adults with Glut1 Deficiency
5

​​​Leaders: Dana Pottschmidt

Next meeting:  Sunday, June 9th at 1:00 PM Eastern

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.

2024 Dates:
June 9
July 14
August 11
September 8
October 13
November 10
December 8

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
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Rely.

The Glut1 Deficiency community is like a family. Rely on one another for support, encouragement, understanding, and wisdom.

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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. 

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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.