2022 Glut1 Deficiency Foundation Conference - San Diego
Our 2022 Scientific and Family Conference to be held in person in beautiful San Diego at the Kona Kai Resort and Spa. This is a unique and special opportunity to bring together all the groups of people who are interested in and committed to improving lives in the Glut1 Deficiency community - patients, families, caregivers, clinicians, researchers, and companies who provide or want to develop products, tools, or treatments.
We'll have Scientific Sessions earlier in the week where we'll hear about new research as well as the latest in understanding Glut1 Deficiency, how it impacts patients, and how best to care for them. Later in the week, we'll focus in the Family Sessions on how to better understand and manage this disease, the research taking place to help move progress forward, some tools and strategies to help make life easier and better, and opportunities to share support and encouragement as we get to know each other better while we meet, share, and learn.
This gathering provides the opportunity for all to build relationships, foster collaborations, and create community while focusing on how to better meet the needs of patients and families.
The goals of our gathering:
We look forward to our time together in San Diego and know that it will provide another milestone in our efforts to bring help and hope to the Glut1 Deficiency community. We appreciate your interest in joining us.
We'll have Scientific Sessions earlier in the week where we'll hear about new research as well as the latest in understanding Glut1 Deficiency, how it impacts patients, and how best to care for them. Later in the week, we'll focus in the Family Sessions on how to better understand and manage this disease, the research taking place to help move progress forward, some tools and strategies to help make life easier and better, and opportunities to share support and encouragement as we get to know each other better while we meet, share, and learn.
This gathering provides the opportunity for all to build relationships, foster collaborations, and create community while focusing on how to better meet the needs of patients and families.
The goals of our gathering:
- share key research updates
- identify critical gaps in understanding and strategies to address them
- foster connections and collaborations across related research areas
- include and engage all stakeholder groups to drive research progress
- attract and inspire new researchers and disease specialists
- improve patient care
- support, connect, and empower the patient and family community
- give patients a voice in the research process
We look forward to our time together in San Diego and know that it will provide another milestone in our efforts to bring help and hope to the Glut1 Deficiency community. We appreciate your interest in joining us.
*please see special information on the status of our hotel room block under the Hotel and Travel Information button below
*please see updates to our COVID-19 policies under the COVID-19 Guidelines and Code of Conduct button below
Information Links:
Additional Information:
COVID-19 Information, Protocols, and Release:
The Glut1 Deficiency Foundation carefully and thoughtfully drafted a policy and supporting guidelines to create a safe and healthy experience for our Glut1 community amidst the ongoing COVID-19 pandemic. Please carefully review the Safety Measures and Guidelines and COVID-19 Code of Conduct found here and under the Information Links above. During the registration process, registering attendees will be required to confirm that all conference participants in their party read and agree to follow the Conference’s Code of Conduct and Guidelines and agree to the Attendance Agreement and Waiver of Liability.
The Glut1 Deficiency Foundation believes the policies and guidelines to be reasonable and necessary to help ensure a safe and healthy environment. We kindly ask that you assist us in this great effort.
Agenda:
The full preliminary agenda is now available. Please keep in mind that it will continue to be updated with official presentation titles and any other changes that need to be made. All speakers listed have been confirmed, and we will make accommodations for virtual participation for speakers who are unable to attend in person.
You can find a basic schedule outline below to help with the logistics of hotel and travel needs.
Activity Room and Children in the Conference Sessions:
We welcome and encourage families to bring children to the conference - they are Glut1 Deficiency patients (or siblings) and the very reason we do what we do! They love to spend time together with others and form friendships. We are also mindful, however, that children can be a distraction during the conference presentations to others who have also invested time and money to attend and want to learn. Children won't be prohibited in the conference sessions, but should they need attention or become noisy, for the consideration of others we kindly ask that you quietly and quickly leave the conference spaces and continue watching in the family room set up for separate viewing. This will be especially important for the recordings, too, so that the audio feed will be clear. It is not realistic or developmentally appropriate for us to expect children to sit for long periods of time in presentation sessions, so we recommend bringing along a caregiver of responsible age or hiring local services. They'll be happier and have more fun, and you can better focus on the presentations and get the most from the conference experience.
We will continue to offer our Activity Room as a way to provide some activities and entertainment during the conference sessions. This is available at no extra cost, but those who use the room and any recreation areas and entertainment included must have a caregiver in attendance with them at all times. No supervision will be provided by the Glut1 Deficiency Foundation, so please have a caregiver providing for your child's supervision and needs if you plan to use the Activity Room. The hotel is on a small island/peninsula surrounded by water, so close supervision from responsible caregivers will be essential.
Special registration pricing will be available for those who come as caregivers but won't be attending conference sessions. Caregivers may register for free if they don't want to join in the meals provided during the conference, or they may register at a special rate if they do wish to have the option to join meals. Please see registration information here or under the Information Links above for more details. We will also provide a list of 3rd party childcare service providers in the area as we get closer to the conference.
Thursday morning special guest: Pacific Animal Productions
Friday morning special guest: Kate and Faces
Hospitality Suite:
In the past, we have provided a space during our conferences with basic keto supplies, tools, and equipment to make travel easier. However, due to COVID-19 concerns, we will not be offering the Hospitality Suite. We'll provide details on meal menus and on available grocery and meal delivery options as we get closer. There are small refrigerators in each guest room, and we will work with the hotel to try to have microwaves available to those who need them in their guest rooms, since having a common area microwave as in the past will not be possible due to COVID-19 restrictions.
The Glut1 Deficiency Foundation carefully and thoughtfully drafted a policy and supporting guidelines to create a safe and healthy experience for our Glut1 community amidst the ongoing COVID-19 pandemic. Please carefully review the Safety Measures and Guidelines and COVID-19 Code of Conduct found here and under the Information Links above. During the registration process, registering attendees will be required to confirm that all conference participants in their party read and agree to follow the Conference’s Code of Conduct and Guidelines and agree to the Attendance Agreement and Waiver of Liability.
The Glut1 Deficiency Foundation believes the policies and guidelines to be reasonable and necessary to help ensure a safe and healthy environment. We kindly ask that you assist us in this great effort.
Agenda:
The full preliminary agenda is now available. Please keep in mind that it will continue to be updated with official presentation titles and any other changes that need to be made. All speakers listed have been confirmed, and we will make accommodations for virtual participation for speakers who are unable to attend in person.
You can find a basic schedule outline below to help with the logistics of hotel and travel needs.
Activity Room and Children in the Conference Sessions:
We welcome and encourage families to bring children to the conference - they are Glut1 Deficiency patients (or siblings) and the very reason we do what we do! They love to spend time together with others and form friendships. We are also mindful, however, that children can be a distraction during the conference presentations to others who have also invested time and money to attend and want to learn. Children won't be prohibited in the conference sessions, but should they need attention or become noisy, for the consideration of others we kindly ask that you quietly and quickly leave the conference spaces and continue watching in the family room set up for separate viewing. This will be especially important for the recordings, too, so that the audio feed will be clear. It is not realistic or developmentally appropriate for us to expect children to sit for long periods of time in presentation sessions, so we recommend bringing along a caregiver of responsible age or hiring local services. They'll be happier and have more fun, and you can better focus on the presentations and get the most from the conference experience.
We will continue to offer our Activity Room as a way to provide some activities and entertainment during the conference sessions. This is available at no extra cost, but those who use the room and any recreation areas and entertainment included must have a caregiver in attendance with them at all times. No supervision will be provided by the Glut1 Deficiency Foundation, so please have a caregiver providing for your child's supervision and needs if you plan to use the Activity Room. The hotel is on a small island/peninsula surrounded by water, so close supervision from responsible caregivers will be essential.
Special registration pricing will be available for those who come as caregivers but won't be attending conference sessions. Caregivers may register for free if they don't want to join in the meals provided during the conference, or they may register at a special rate if they do wish to have the option to join meals. Please see registration information here or under the Information Links above for more details. We will also provide a list of 3rd party childcare service providers in the area as we get closer to the conference.
Thursday morning special guest: Pacific Animal Productions
Friday morning special guest: Kate and Faces
Hospitality Suite:
In the past, we have provided a space during our conferences with basic keto supplies, tools, and equipment to make travel easier. However, due to COVID-19 concerns, we will not be offering the Hospitality Suite. We'll provide details on meal menus and on available grocery and meal delivery options as we get closer. There are small refrigerators in each guest room, and we will work with the hotel to try to have microwaves available to those who need them in their guest rooms, since having a common area microwave as in the past will not be possible due to COVID-19 restrictions.
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Scientific Meeting Schedule:
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Family Meeting Schedule:
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Monday, July 11
Sessions: 2:00 PM to 6:30 PM Poster Session: 6:30-7:30 PM Reception: 6:30-8:00 PM small plate food stations provided Tuesday, July 12 Sessions: 8:00 AM to 6:30 PM breakfast and lunch provided Wednesday, July 13 Research Planning and Discussions: 9:00-11:00 AM core network members Welcome Social for Family Conference: 4:00-7:00 PM cookout/picnic provided - beach party |
Wednesday, July 13
Welcome Social for Family Conference: 4:00-7:00 PM cookout/picnic provided Thursday, July 14 Sessions: 9:00 AM to 5:00 PM Evening Social: 7:00-9:00 PM breakfast and lunch provided Friday, July 15 Sessions: 9:00 AM to 5:00 PM Evening Social: 7:00-9:00 PM breakfast and lunch provided |
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Sponsors and Exhibitors
Gold Sponsor
Silver Sponsors
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Bronze Sponsor
Nonprofit Friend
