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Scientific Session
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Registration:
Registration check-in will be open from 10:00 am until 2:00 pm on Monday, and it will also be open from 7:000-8:00 AM on Tuesday. You'll be able to pick up during registration your name badges, conference agendas, bags, special information, and any shirts you have ordered (see below).
You will also be asked to follow the COVID-19 screening protocols previously outlined as you come to registration to pick up your materials and information.
On-site registration will not be available, so please make sure you have registered online before July 1st.
You will also be asked to follow the COVID-19 screening protocols previously outlined as you come to registration to pick up your materials and information.
On-site registration will not be available, so please make sure you have registered online before July 1st.
Agenda:
While the agenda topics are set, there may be some further revisions due to travel issues related to the pandemic. Presenters have been given the option to participate virtually, and once we get closer and have more decisions from the speakers, we will update the agenda to reflect who will be in person and who will be virtual.
While the agenda topics are set, there may be some further revisions due to travel issues related to the pandemic. Presenters have been given the option to participate virtually, and once we get closer and have more decisions from the speakers, we will update the agenda to reflect who will be in person and who will be virtual.
Conference Shirts:
We've set up a page to collect t-shirt orders to be delivered to you at registration check-in at the conference. Cost is $15 each and youth and adult sizes are available. Please find more information and order shirts here by June 18th.
Monday Evening Poster Session and Reception:
6:30-7:30 pm Poster Session
6:30-8:30 pm Reception - Kona Kai Beach
The poster session will begin after the last presentation of the day. Please find more details about poster submissions here, and we'll be accepting abstract submissions through June 1st. Accepted posters will receive free Scientific Conference registration for the presenting author!
The evening reception will take place from 6:30 to 8:30 pm on the Kona Kai Beach. Heavy appetizers with food stations or a buffet meal will be provided, so there's no need to plan for dinner elsewhere unless you just want to get out and explore.
6:30-7:30 pm Poster Session
6:30-8:30 pm Reception - Kona Kai Beach
The poster session will begin after the last presentation of the day. Please find more details about poster submissions here, and we'll be accepting abstract submissions through June 1st. Accepted posters will receive free Scientific Conference registration for the presenting author!
The evening reception will take place from 6:30 to 8:30 pm on the Kona Kai Beach. Heavy appetizers with food stations or a buffet meal will be provided, so there's no need to plan for dinner elsewhere unless you just want to get out and explore.
Wednesday Morning Meeting:
9:00-11:00 AM
This will be a meeting open to anyone from the scientific meeting attendees who is interested in being part of our collaborative research network we are working to build - clinicians, dietitians, basic scientists, and patients/families. Some things we plan to discuss:
reflect on the learnings from the scientific meeting:
brainstorm ways the Glut1 Deficiency Foundation and other patient organizations can be most helpful:
future meeting ideas
Medical Advisory Board and Scientific Advisory Board:
This will be a meeting open to anyone from the scientific meeting attendees who is interested in being part of our collaborative research network we are working to build - clinicians, dietitians, basic scientists, and patients/families. Some things we plan to discuss:
reflect on the learnings from the scientific meeting:
- what are you most excited about?
- what about changes in disease classification? how? what next?
- what are the biggest stumbling blocks for research progress?
- what can we change?
- what can we work around?
- who else needs to be at the table?
- what are some next best steps?
brainstorm ways the Glut1 Deficiency Foundation and other patient organizations can be most helpful:
- we can't do everything, what can we do best?
- how can we best utilize our resources to better support clinicians? researchers? patients and families?
future meeting ideas
- how do we sustain and grow and reach new audiences
- how do we best meet content needs of all stakeholders - (researchers, clinicians, dietitians, patients/families)
- what is the best rhythm to the conferences (frequency, locations, time of year)
Medical Advisory Board and Scientific Advisory Board:
- does it make sense to merge them?
- who wants to stay, who wants to join?
- how can we better leverage and engage this team?
Wednesday Night Welcome:
4:00-7:00 PM
All Scientific Conference attendees are invited to join us for the Wednesday night welcoming social for the Family Conference. This will be a chance to spend some time together and let the patient and scientific communities get to know each other better.
We will start at 4:00 PM and have brief introductions so we can learn more about our community. We will have an MC who will help attendees share some information about themselves, so come prepared to share a little of your story if you are comfortable doing so. Think of this as your "elevator pitch", or sharing your story in the time it takes to take an elevator ride with someone. This is an important advocacy skill to develop, so this is a great time to work on that!
Some things families may want to include in this elevator pitch:
Once we've had introductions, we'll enjoy an evening on the Kona Kai beach with outdoor game stations, a DJ and dancing, a photo booth, a buffet dinner, and a visit from the Kona Ice Truck (with Sugar/Carb free options, too!).
Menu:
Dress:
In honor and memory of Drew Hemlock, who was an avid sports fan with several favorite teams, we are asking everyone to wear your favorite sports jersey or team shirt to this event to help celebrate, make connections, and remember Drew, who died in December at age 37. He was at every previous Glut1 Deficiency Foundation conference and made sure everyone who came was greeted with a smile and a good time. We will miss him terribly this year, but he'd want us to have fun in his honor!
4:00-7:00 PM
All Scientific Conference attendees are invited to join us for the Wednesday night welcoming social for the Family Conference. This will be a chance to spend some time together and let the patient and scientific communities get to know each other better.
We will start at 4:00 PM and have brief introductions so we can learn more about our community. We will have an MC who will help attendees share some information about themselves, so come prepared to share a little of your story if you are comfortable doing so. Think of this as your "elevator pitch", or sharing your story in the time it takes to take an elevator ride with someone. This is an important advocacy skill to develop, so this is a great time to work on that!
Some things families may want to include in this elevator pitch:
- names of all in your group
- where you are from
- your loved one with Glut1's name and age at diagnosis
- something special you might like to share
Once we've had introductions, we'll enjoy an evening on the Kona Kai beach with outdoor game stations, a DJ and dancing, a photo booth, a buffet dinner, and a visit from the Kona Ice Truck (with Sugar/Carb free options, too!).
Menu:
- hot dogs
- hamburgers (beef and vegan options)
- vegetable tray with hummus and ranch dip
- salad greens
- beverages
- Kona Ice snow cones (see nutritional information here)
Dress:
In honor and memory of Drew Hemlock, who was an avid sports fan with several favorite teams, we are asking everyone to wear your favorite sports jersey or team shirt to this event to help celebrate, make connections, and remember Drew, who died in December at age 37. He was at every previous Glut1 Deficiency Foundation conference and made sure everyone who came was greeted with a smile and a good time. We will miss him terribly this year, but he'd want us to have fun in his honor!
Menus:
The evening reception on Monday will offer small plates and food stations with a cash bar (menu to be shared when finalized). Buffets will be provided for breakfast and lunch on Tuesday with dinner on your own on Tuesday evening. You can find a list of area restaurants here, and there is a nice restaurant on the hotel property called The Vessel. Don't forget about UberEats, GrubHub, Postmates, Door Dash, Caviar and other restaurant delivery services in the area.
Breakfast on Tuesday:
Lunch on Tuesday:
The evening reception on Monday will offer small plates and food stations with a cash bar (menu to be shared when finalized). Buffets will be provided for breakfast and lunch on Tuesday with dinner on your own on Tuesday evening. You can find a list of area restaurants here, and there is a nice restaurant on the hotel property called The Vessel. Don't forget about UberEats, GrubHub, Postmates, Door Dash, Caviar and other restaurant delivery services in the area.
Breakfast on Tuesday:
- beverages
freshly squeezed orange & grapefruit juice, freshly brewed coffee, decaffeinated coffee, select teas - sliced seasonal fruit display
- scrambled eggs
- chives
- applewood smoked bacon & pork sausage links
- yogurt, granola, and berries
Lunch on Tuesday:
- kale caesar
organic kale, romaine heart, parmesan, white anchovy - new england clam chowder
- noble garden salad
bulger, quinoa, watermelon radish, avocado, assorted vegetables, lime vinaigrette - roasted brussel sprouts
garlic chips, bacon, sea salt - yukon potato purée
roasted garlic - butternut squash ravioli
sage, brown butter, ricotta - organic chicken breast
confit lemon, extra virgin olive oil, fine herbs - crispy pork shanks
sriracha bourbon - key lime pie and berries & whipped cream
Area Child Care Services:
If you are in need of child care services during the conference or while visiting San Diego, you can find some options below:
If you are in need of child care services during the conference or while visiting San Diego, you can find some options below:
Additional Information:
- hotel check-in time 4:00 PM and check-out time 11:00 AM
- wheelchair accessible rooms are available (check the option on the reservation link)
- other accessibility information for the hotel property
- small refrigerators in each room
- free wi-fi when reservations made through our special reservation link
- onsite restaurant, bars, and small marketplace
- 10% discount at Spa Terre (onsite spa) for conference guests - excludes specials and merchandise
- 10% discount at Vessel Restaurant (onsite) - must present conference ID card provided by hotel at check-in
- biking and walking paths around the perimeter of Shelter Island
- cruiser bike rentals from the hotel (free with daily resort fee)
- outdoor recreation on the sandy beach area (no water access from the beach)
- lawn games on hotel property
- two pools (one family pool with a wheelchair lift, one adults only pool)
- marina adjacent to hotel with rentals available (paddle boards, kayaks, jet skis, boats)
- community park and playground across the street
- .6 miles to Shoreline Park with boat launch, rentals, and swimming at Grace Beach
- 3 miles from San Diego International Airport (no shuttle service to hotel)
- restaurants nearby
- groceries nearby: Ralph's and Jensen's
- drugstore nearby
- closest hospital
- closest children's hospital
Transportation:
- Hotel parking is discounted at $15 daily.
- Map and directions
- Getting around San Diego
