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AGENDA AND SCHEDULE:
Please find the most recent agenda and schedule details here. The agenda page was not formatted to be mobile-friendly, so it is best viewed on a computer. The agenda is subject to change, but hopefully only minor adjustments would be needed at this point. You will receive a printed agenda book during registration at the conference with all the schedule information in one place.
Thursday's conference sessions will all be whole group, and then Friday we will have a mix of whole group and breakout sessions.
Exhibitors will have booths throughout both days, but we will feature a special dedicated exhibit time on Thursday at the end of the day (4:30-5:30 PM) where there will be keto foods and products available for sampling from the exhibitors. The poster session will be held during this time as well and everyone is invited to participate. The deadline for poster submissions has passed, but please let us know if you are still interested in submitting one.
Please find the most recent agenda and schedule details here. The agenda page was not formatted to be mobile-friendly, so it is best viewed on a computer. The agenda is subject to change, but hopefully only minor adjustments would be needed at this point. You will receive a printed agenda book during registration at the conference with all the schedule information in one place.
Thursday's conference sessions will all be whole group, and then Friday we will have a mix of whole group and breakout sessions.
Exhibitors will have booths throughout both days, but we will feature a special dedicated exhibit time on Thursday at the end of the day (4:30-5:30 PM) where there will be keto foods and products available for sampling from the exhibitors. The poster session will be held during this time as well and everyone is invited to participate. The deadline for poster submissions has passed, but please let us know if you are still interested in submitting one.
SPANISH TRANSLATIONS:
Vivian Mathis has helped make arrangements for the Argentinian Embassy to provide a Spanish translation during the conference. Please let us know if you need this service.
SHIRTS:
We traditionally have a conference t-shirt available to purchase for those interested. These are priced at $10 each and you can find a picture and all the ordering details here. Shirts will be delivered at the conference during registration. Deadline for shirt orders is June 18th.
We traditionally have a conference t-shirt available to purchase for those interested. These are priced at $10 each and you can find a picture and all the ordering details here. Shirts will be delivered at the conference during registration. Deadline for shirt orders is June 18th.
REGISTRATION:
Registration will be open from 4:00-6:00 pm on Wednesday just ahead of the Red Carpet Celebration. It will also be open from 7:30-8:30 AM on Thursday and Friday. You'll be able to pick up during registration your name badges, conference agendas, bags, special information, tour tickets if you've purchased, and any shirts you have ordered.
Registration will be open from 4:00-6:00 pm on Wednesday just ahead of the Red Carpet Celebration. It will also be open from 7:30-8:30 AM on Thursday and Friday. You'll be able to pick up during registration your name badges, conference agendas, bags, special information, tour tickets if you've purchased, and any shirts you have ordered.
WHEELCHAIR AND STROLLER RENTAL:
For those who don't regularly use a wheelchair or stroller but would like to have one for the conference or socials, there is a local company who rents them for a reasonable price and will deliver them to the hotel. Find more information here.
RED CARPET CELEBRATION:
This will be a chance to spotlight the patients, learn a little more about them, and hopefully help them feel special - after all, they are the reason we all are there and are the reason we do what we do! We will begin the celebration at 6:00 PM and expect it to last until around 9:00 PM.
Food:
It will be an evening focused on fun more than food, so you may want to make sure everyone has had a good meal before we get started. We will have a Kona Ice truck during the evening with snow cones for everyone, including zero sugar and zero carb versions.
Main Event:
Patients will be introduced by our Master of Ceremonies as they walk the red carpet and he will share a little about each so we can get to know each other better. The patient's family will be waiting at the end of the red carpet up front so we can meet all of the family together, too. You may choose to have an escort for your star as he or she walks the red carpet if you feel it will help with confidence or any mobility issues. We have over 70 patients registered so far, which is wonderful....but it also means we will have to keep the introductions brief, unfortunately. It will be great to put names with faces, though, and learn more about our fellow Glut1 family members.
*Please complete by July 1st this questionnaire form for patients who are participating so that we can create and compile the introductions from the information you provide*
We will arrange for the "paparazzi" during the main event. I'm sure each of us will be taking plenty of photos as well, but we want you to be able to focus more on enjoying the moment rather than getting the pictures. We will provide a photo release for you to view and sign at your discretion during registration.
Dress:
We are inviting patients to choose an outfit to wear that represents something about themselves they'd like to share with us - perhaps something representing where you are from, their interests or hobbies, their favorite sports team or characters, their personality, or just an outfit that makes them feel special or comfortable. It will be completely up to you, and we want this to be fun and not the least bit stressful, so whatever you want to wear will be perfect. The same goes for the rest of the conference - comfort being the key.
Extras:
We will be having a very brief presentation from the Glut1 Deficiency Foundation during the event. There will be an opportunity to bid on a couple of special items as well - those are in progress and we will update you when we get a little closer. We will have some Love Some1 with Glut1 merchandise from our store there to purchase as well, both during the Red Carpet Celebration and the rest of the conference. We will also have our exhibit table set up and you can pick up brochures and other educational information you may like to have.
On a side note, we plan to have some balloon decorations, so please let us know if you have any latex allergies.
After Party:
After the main event, we will have a DJ and dance party, Kona Ice snow cones to enjoy, and a professional photo booth to create more mementos for the evening.
This will be a chance to spotlight the patients, learn a little more about them, and hopefully help them feel special - after all, they are the reason we all are there and are the reason we do what we do! We will begin the celebration at 6:00 PM and expect it to last until around 9:00 PM.
Food:
It will be an evening focused on fun more than food, so you may want to make sure everyone has had a good meal before we get started. We will have a Kona Ice truck during the evening with snow cones for everyone, including zero sugar and zero carb versions.
Main Event:
Patients will be introduced by our Master of Ceremonies as they walk the red carpet and he will share a little about each so we can get to know each other better. The patient's family will be waiting at the end of the red carpet up front so we can meet all of the family together, too. You may choose to have an escort for your star as he or she walks the red carpet if you feel it will help with confidence or any mobility issues. We have over 70 patients registered so far, which is wonderful....but it also means we will have to keep the introductions brief, unfortunately. It will be great to put names with faces, though, and learn more about our fellow Glut1 family members.
*Please complete by July 1st this questionnaire form for patients who are participating so that we can create and compile the introductions from the information you provide*
We will arrange for the "paparazzi" during the main event. I'm sure each of us will be taking plenty of photos as well, but we want you to be able to focus more on enjoying the moment rather than getting the pictures. We will provide a photo release for you to view and sign at your discretion during registration.
Dress:
We are inviting patients to choose an outfit to wear that represents something about themselves they'd like to share with us - perhaps something representing where you are from, their interests or hobbies, their favorite sports team or characters, their personality, or just an outfit that makes them feel special or comfortable. It will be completely up to you, and we want this to be fun and not the least bit stressful, so whatever you want to wear will be perfect. The same goes for the rest of the conference - comfort being the key.
Extras:
We will be having a very brief presentation from the Glut1 Deficiency Foundation during the event. There will be an opportunity to bid on a couple of special items as well - those are in progress and we will update you when we get a little closer. We will have some Love Some1 with Glut1 merchandise from our store there to purchase as well, both during the Red Carpet Celebration and the rest of the conference. We will also have our exhibit table set up and you can pick up brochures and other educational information you may like to have.
On a side note, we plan to have some balloon decorations, so please let us know if you have any latex allergies.
After Party:
After the main event, we will have a DJ and dance party, Kona Ice snow cones to enjoy, and a professional photo booth to create more mementos for the evening.
ALL CALL FOR PHOTOS!
At this year’s conference we’d like to showcase the amazing achievements and special talents of our kids and adults with Glut1 Deficiency. I still remember being told that my baby might not walk or talk and now here she is, 12 years later, winning first place in a horse show and boy did she earn that first! I have never seen her so excited and proud of herself!
Let’s show off their special skills, awards and achievements to other families, doctors, nurses, dietitians, researchers, therapists, and those working so hard to help improve the lives of our family members.
Please send a high resolution image to Joanna Snyder at joannamarie1976@gmail.com by June 17th. Please include 1 word that describes your child in relation to the achievement.
“Once you choose hope, anything’s possible.” – Christopher Reeve
At this year’s conference we’d like to showcase the amazing achievements and special talents of our kids and adults with Glut1 Deficiency. I still remember being told that my baby might not walk or talk and now here she is, 12 years later, winning first place in a horse show and boy did she earn that first! I have never seen her so excited and proud of herself!
Let’s show off their special skills, awards and achievements to other families, doctors, nurses, dietitians, researchers, therapists, and those working so hard to help improve the lives of our family members.
Please send a high resolution image to Joanna Snyder at joannamarie1976@gmail.com by June 17th. Please include 1 word that describes your child in relation to the achievement.
“Once you choose hope, anything’s possible.” – Christopher Reeve
CONFERENCE THERAPY PROJECT:
One of the topics for the conference will be different types of therapies and the benefits of each for our Glut1 Deficiency patients. We have some experts who will be presenting, and the Education Committee has been working to compile some helpful strategies and activities to share. We'd like to ask the larger community to get involved. Our goal is to create some resources to share on our website from the information gathered from parent input and also from what is presented at the conference. If you are intereted in helping, please download the form here and return it by June 15th to Education Director Maria Rebbecchi when finished. We greatly appreciate the help!
One of the topics for the conference will be different types of therapies and the benefits of each for our Glut1 Deficiency patients. We have some experts who will be presenting, and the Education Committee has been working to compile some helpful strategies and activities to share. We'd like to ask the larger community to get involved. Our goal is to create some resources to share on our website from the information gathered from parent input and also from what is presented at the conference. If you are intereted in helping, please download the form here and return it by June 15th to Education Director Maria Rebbecchi when finished. We greatly appreciate the help!
SOCIALS:
The Red Carpet Celebration is discussed above, but here are a few details on some of the other social events we have planned. The hotel doesn't have a pool, unfortunately, and that is one of the reasons we have planned some other special activities each evening and on Saturday morning.
Thursday Night: Koo Koo Kanga Roo 7:30 PM
It is hard to put what they are into words, but others have described them as an "interactive dance party duo" and "think Beastie Boys meets Sesame Street". Visit their Wikipedia page and their website to learn more, or check out their YouTube channel to get a taste. If you know any students who use Go Noodle at school for brain breaks and movement, they will definitely know about Koo Koo Kanga Roo. They are loved by children and adults alike, so it should be a fun event for everyone. They may have a merchandise table there, too - we will keep you posted about that. Admission is included with registration - no additional cost.
Friday Night: Twilight Monument Tour 6:30 - 10:00 PM
This is a ticketed event ($35 each - tickets sold during registration process) with DC Trails for a guided and narrated tour of many of the most popular monuments and sights around the Washington, DC area. We will be picked up by chartered buses at the hotel at 6:30 and return at approximately 10:00 pm. The buses are air-conditioned and accessible for wheelchairs and strollers and also have restrooms aboard.
There will be planned stops along the route so we can get a closer look at some of the monuments. The stops range from 15-45 minutes and typically include the World War II Memorial, the Vietnam Memorial, the Korean Memorial, and the Lincoln Memorial along the main National Mall, and then the Jefferson Memorial, the Martin Luther King, Jr. Memorial and the Franklin Delano Roosevelt Memorial along the Tidal Basin area. There will likely be drive-by viewings of the White House and Arlington National Cemetery along with several other notable and historic locations.
Tickets will be given to you at registration if you have purchased them. If you haven't yet and would like to join us, please use the registration link to do that before July 1st (the sooner the better for planning purposes).
Saturday Morning: United States Capitol Building Tour Approximately 9:00 AM until 1:00 PM
This is a ticketed event and is included with the purchase of the Twilight Monument Tour ticket for Friday night. The times for Saturday may be adjusted slightly (by 30 minutes or so) once the final arrangements have been made with the tour bus company. We will have that finalized as we get closer and know total numbers.
Chartered buses will pick us up at the hotel at 9:00 AM (subject to change slightly) and drive over to the US Capitol Building. The tour is scheduled for 90 minutes - a 30 minute time frame set aside for security screening followed by a 15 minute introductory video, and then a 45 minute guided walking tour. Senator Rand Paul's office arranged our tours, and the official tour start times are at 10:10 and 10:20 AM, with two groups of up to 100 in each. We'll have extra time to explore the grounds and visit the cafeteria and gift shop while there. The Capitol grounds and tour are fully accessible, and there are approximately 30 wheelchairs that can be checked out free of charge with a photo ID. We hope to also be able to do a group photo while on the grounds, likely just after the finish of our tours. We will plan to leave at 1:00 by bus back to the hotel. We know that some may choose to stay on the National Mall for further sightseeing, and this will be fine - just make sure to notify us prior so that we will know not to expect and wait for you on the return bus.
The Red Carpet Celebration is discussed above, but here are a few details on some of the other social events we have planned. The hotel doesn't have a pool, unfortunately, and that is one of the reasons we have planned some other special activities each evening and on Saturday morning.
Thursday Night: Koo Koo Kanga Roo 7:30 PM
It is hard to put what they are into words, but others have described them as an "interactive dance party duo" and "think Beastie Boys meets Sesame Street". Visit their Wikipedia page and their website to learn more, or check out their YouTube channel to get a taste. If you know any students who use Go Noodle at school for brain breaks and movement, they will definitely know about Koo Koo Kanga Roo. They are loved by children and adults alike, so it should be a fun event for everyone. They may have a merchandise table there, too - we will keep you posted about that. Admission is included with registration - no additional cost.
Friday Night: Twilight Monument Tour 6:30 - 10:00 PM
This is a ticketed event ($35 each - tickets sold during registration process) with DC Trails for a guided and narrated tour of many of the most popular monuments and sights around the Washington, DC area. We will be picked up by chartered buses at the hotel at 6:30 and return at approximately 10:00 pm. The buses are air-conditioned and accessible for wheelchairs and strollers and also have restrooms aboard.
There will be planned stops along the route so we can get a closer look at some of the monuments. The stops range from 15-45 minutes and typically include the World War II Memorial, the Vietnam Memorial, the Korean Memorial, and the Lincoln Memorial along the main National Mall, and then the Jefferson Memorial, the Martin Luther King, Jr. Memorial and the Franklin Delano Roosevelt Memorial along the Tidal Basin area. There will likely be drive-by viewings of the White House and Arlington National Cemetery along with several other notable and historic locations.
Tickets will be given to you at registration if you have purchased them. If you haven't yet and would like to join us, please use the registration link to do that before July 1st (the sooner the better for planning purposes).
Saturday Morning: United States Capitol Building Tour Approximately 9:00 AM until 1:00 PM
This is a ticketed event and is included with the purchase of the Twilight Monument Tour ticket for Friday night. The times for Saturday may be adjusted slightly (by 30 minutes or so) once the final arrangements have been made with the tour bus company. We will have that finalized as we get closer and know total numbers.
Chartered buses will pick us up at the hotel at 9:00 AM (subject to change slightly) and drive over to the US Capitol Building. The tour is scheduled for 90 minutes - a 30 minute time frame set aside for security screening followed by a 15 minute introductory video, and then a 45 minute guided walking tour. Senator Rand Paul's office arranged our tours, and the official tour start times are at 10:10 and 10:20 AM, with two groups of up to 100 in each. We'll have extra time to explore the grounds and visit the cafeteria and gift shop while there. The Capitol grounds and tour are fully accessible, and there are approximately 30 wheelchairs that can be checked out free of charge with a photo ID. We hope to also be able to do a group photo while on the grounds, likely just after the finish of our tours. We will plan to leave at 1:00 by bus back to the hotel. We know that some may choose to stay on the National Mall for further sightseeing, and this will be fine - just make sure to notify us prior so that we will know not to expect and wait for you on the return bus.
MENUS:
Kona Ice snow cones will be provided to everyone during the Red Carpet Celebration on Wednesday evening. There will be zero carb/zero sugar options available.
Lunch has always been provided during our conferences but this year we are including breakfast as well hoping to make things more convenient for families. A buffet style breakfast and lunch will be provided on Thursday and Friday to all except those registering as child care providers without meals (a free registration). Menus are provided below. We typically try to include some keto-friendly selections so that families may use some food from the buffets to create meals if needed.
Dinner and the rest of the meals are "on your own". The hotel is located within a couple of blocks of several restaurant selections aross a wide span of price ranges, and we will plan to have a list of those in your registration materials or at hotel check-in. There will be a window of time between the close of the conference and the start of the social activity on both Thursday (2 hours) and Friday (1.5 hours) - so just keep that in mind when making your restaurant selections for those evening meals.
The hotel has a breakfast restaurant on property as well as a snack and sandwich cafe, and there is also a bar in the lobby. If you are a Hilton Honors member with executive level privileges, there is a nice executive lounge on property that offers free breakfast and free snacks throughout the day.
Breakfast on Thursday and Friday (same menu both days):
Fresh Sliced Fresh Fruit and Berries
Variety of Cold Cereals with Milk
Individual Low-fat Flavored Yogurts
Fluffy Scrambled Eggs
Crisp Bacon
Country Herb Skillet Potatoes
Hilton Signature Muffins
Fresh Orange, Apple & Cranberry Juices
Freshly Brewed Coffee & Decaf
Selection of Hot Teas
Lunch on Thursday:
Mixed Baby Field Greens
Creamy Cole Slaw
Pasta Salad
BBQ Chicken, Kosher Hot Dogs, Grilled Jumbo Hamburgers
Fresh Corn on the Cob
Baked Beans
Corn Bread
Potato & Tortilla Chips
Condiments Tray with Sliced Tomatoes, Onions, Lettuce
Assorted Cheeses
Mustard, Mayo & Ketchup
Apple & Cherry Pie
Fresh Berries & Whipped Cream
Lunch on Friday:
Chips & Salsa
Tortilla Soup
Mixed Baby Field Greens
Roasted Corn & Black Bean Salad
Cheese Enchiladas
Make Your Own Fajitas Featuring: Seasoned Grilled Beef & Mesquite Grilled Chicken
Mexican Rice, Pinto Beans
Pico de Gallo
Sour Cream & Guacamole
Sopapillas & Authentic Flan
Fresh Berries & Whipped Cream
TEEN AND ADULT PATIENT INFORMATION:
Sessions:
As many of you know, we are planning some special adult focused sessions and activities during this conference. These sessions will be open to any teen or adult patient for the patient sessions and to any parent interested for the parent sessions. There are no particular age guidelines as we know that parents of younger patients are looking ahead to the transitions and many will want to learn and be better prepared. We look forward as well to sharing some of the new insights learned through the adult patient survey and hope to collect additional input from the discussions at the conference. This information will be important in helping educate others, shape and guide care for adult patients, and help identify gaps that need to be addressed.
Stipends:
As part of the PCORI grant we were given, we are able to provide $500 stipends to adult patients aged 17 and older with enough funding awarded for up to 45 patients.
Stipends will be paid by check to eligible US citizen attendees at the conference during registration, and for international adult patient attendees we will work with you to make the payment arrangements in another form (PayPal or wire transfer).
Sessions:
As many of you know, we are planning some special adult focused sessions and activities during this conference. These sessions will be open to any teen or adult patient for the patient sessions and to any parent interested for the parent sessions. There are no particular age guidelines as we know that parents of younger patients are looking ahead to the transitions and many will want to learn and be better prepared. We look forward as well to sharing some of the new insights learned through the adult patient survey and hope to collect additional input from the discussions at the conference. This information will be important in helping educate others, shape and guide care for adult patients, and help identify gaps that need to be addressed.
Stipends:
As part of the PCORI grant we were given, we are able to provide $500 stipends to adult patients aged 17 and older with enough funding awarded for up to 45 patients.
Stipends will be paid by check to eligible US citizen attendees at the conference during registration, and for international adult patient attendees we will work with you to make the payment arrangements in another form (PayPal or wire transfer).
CORIELL BIOBANK:
We have made special arrangement with the Coriell Institute for Medical Research to set up a biobank collection station at the conference. While this might sound like a killjoy for the conference fun, it is an important effort to provide biological samples to be made available to those researchers interested in studying Glut1 Deficiency. Coriell is a highly respected and ethical nonprofit organization providing biobank services and supported with funding from the NIH (National Institutes of Health). We will have additional information in the registration materials, but wanted to give advance notice and information. You can find out more in advance about Coriell at their website.
Coriell phlebotomists will be collecting blood samples on Thursday and Friday from willing patients and also from unaffected individuals. Participation is voluntary. They are planning to have an exhibit booth as well to help give more information to patients, families, and to researchers in attendance about their programs and services. These services are being provided free of charge.
Coriell also offers a program where patients may choose to have extra biological samples taken and sent to Coriell during a visit with your regular doctor or lab. They can provide collection kits for these purposes.
Additional Information from Coriell is included below, and a brochure is available here. Please contact Julia if you are interested in taking part at the conference or would like to order a collection kit to use at a lab visit. We are grateful for any consideration you may give to participating.
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Contribute to the Future of Glut1 Deficiency Research
You can play an important role in advancing research for Glut1 Deficiency. The Coriell Institute for Medical Research is currently looking for blood donations to add to the NIGMS Human Genetic Cell Repository. Cell lines and DNA obtained from these samples will be available to researchers around the world who are working to advance the diagnosis, treatment and prevention of this disorder.
At this year’s conference, a qualified phlebotomist and the NIGMS (National Institute of General Medical Sciences) team will be running a blood collection drive.
If you are interested, please contact the NIGMS Repository (Julia Keklak at jkeklak@coriell.org/856-536-3170) to sign up!
Contact us today to contribute to the medical advancements of tomorrow.
We have made special arrangement with the Coriell Institute for Medical Research to set up a biobank collection station at the conference. While this might sound like a killjoy for the conference fun, it is an important effort to provide biological samples to be made available to those researchers interested in studying Glut1 Deficiency. Coriell is a highly respected and ethical nonprofit organization providing biobank services and supported with funding from the NIH (National Institutes of Health). We will have additional information in the registration materials, but wanted to give advance notice and information. You can find out more in advance about Coriell at their website.
Coriell phlebotomists will be collecting blood samples on Thursday and Friday from willing patients and also from unaffected individuals. Participation is voluntary. They are planning to have an exhibit booth as well to help give more information to patients, families, and to researchers in attendance about their programs and services. These services are being provided free of charge.
Coriell also offers a program where patients may choose to have extra biological samples taken and sent to Coriell during a visit with your regular doctor or lab. They can provide collection kits for these purposes.
Additional Information from Coriell is included below, and a brochure is available here. Please contact Julia if you are interested in taking part at the conference or would like to order a collection kit to use at a lab visit. We are grateful for any consideration you may give to participating.
---------------
Contribute to the Future of Glut1 Deficiency Research
You can play an important role in advancing research for Glut1 Deficiency. The Coriell Institute for Medical Research is currently looking for blood donations to add to the NIGMS Human Genetic Cell Repository. Cell lines and DNA obtained from these samples will be available to researchers around the world who are working to advance the diagnosis, treatment and prevention of this disorder.
At this year’s conference, a qualified phlebotomist and the NIGMS (National Institute of General Medical Sciences) team will be running a blood collection drive.
If you are interested, please contact the NIGMS Repository (Julia Keklak at jkeklak@coriell.org/856-536-3170) to sign up!
Contact us today to contribute to the medical advancements of tomorrow.
CHILDREN'S ACTIVITY ROOM:
The children's activity room will be open during the daytime conference sessions on Thursday and Friday. It will be staffed with some volunteers who will be there to assist with activities and entertainment, but each family must have someone of responsible age to supervise their underage children while in the room.
General activities available the entire time will be some games, puzzles, arts and crafts supplies, movies, books, etc. The room is quite large and will also provide a good place for patients and siblings just to hang out and talk or to rest in the corner with pillows and blankets.
There will be special structured activities in the room on Thursday from 1:30-4:00 and on Friday from 2:30-4:30. All patients, child care providers, and siblings are welcomed. Thursday's activities will feature Capital Music Therapy and Ferrets and Friends, and on Friday we welcome Mr. Bond's Science Guys. We hope these will be educational and fun activities for everyone who attends.
The children's activity room will be open during the daytime conference sessions on Thursday and Friday. It will be staffed with some volunteers who will be there to assist with activities and entertainment, but each family must have someone of responsible age to supervise their underage children while in the room.
General activities available the entire time will be some games, puzzles, arts and crafts supplies, movies, books, etc. The room is quite large and will also provide a good place for patients and siblings just to hang out and talk or to rest in the corner with pillows and blankets.
There will be special structured activities in the room on Thursday from 1:30-4:00 and on Friday from 2:30-4:30. All patients, child care providers, and siblings are welcomed. Thursday's activities will feature Capital Music Therapy and Ferrets and Friends, and on Friday we welcome Mr. Bond's Science Guys. We hope these will be educational and fun activities for everyone who attends.
SIBLING SESSION:
We have arranged for a special sibling support session to be led by Child Life experts at Inova Children's Hospital. This will take place on Friday at 1:00. All siblings of all ages will be welcomed to attend. There will also be a special session of music therapy on Thursday (1:00-2:30 timeframe) just for siblings.
We have arranged for a special sibling support session to be led by Child Life experts at Inova Children's Hospital. This will take place on Friday at 1:00. All siblings of all ages will be welcomed to attend. There will also be a special session of music therapy on Thursday (1:00-2:30 timeframe) just for siblings.
HOSPITALITY ROOM:
We will have our customary hospitality room available from Wednesday evening through Friday evening for convenience for our keto families. We will provide cream, oils, ranch dressing, mayonnaise, butter, and some other diet staples to prevent you from having to travel with those items for the conference period or to help if you've forgotten something. We will also have a microwave available with some gram scales, paper plates, utensils, and seating.
All guest rooms have a refrigerator for ease of food storage in your room.
We will have our customary hospitality room available from Wednesday evening through Friday evening for convenience for our keto families. We will provide cream, oils, ranch dressing, mayonnaise, butter, and some other diet staples to prevent you from having to travel with those items for the conference period or to help if you've forgotten something. We will also have a microwave available with some gram scales, paper plates, utensils, and seating.
All guest rooms have a refrigerator for ease of food storage in your room.
SIGHTSEEING AND ENJOYING THE AREA:
Many families are extending their stay to make a vacation out of the trip. The hotel, Hilton Crystal City, is in a great location for sightseeing and this was one of the main reasons it was selected as the venue. It is close to the Reagan National Airport with a free hotel shuttle there and also a free shuttle within a 2 mile radius of the hotel.
Crystal City is officially in Arlington, Virginia, just across the river from Washington, DC. The Pentagon is just 2 stops up the Metro subway line and Arlington National Cemetery is just 3. The National Mall, also known as "America's Front Yard" with monuments, Smithsonian museums, the White House, and the Capitol Building, is a short ride on the Metro. Some other popular locations that are easily accessible are Mount Vernon, Old Town Alexandria, the National Zoo, the National Cathedral, the Holocaust Museum and Memorial, Chinatown, Georgetown, the Capital One Arena, and the Washington Nationals Stadium. A large shopping mall and food court, Fashion Center, is 1 stop up at Pentagon City and is connected to the subway station there.
Many of the museums and monuments offer free admission, but there are security checks with bag searches involved at the museums so you may want to keep that in mind when choosing what to bring with you and travel as lightly as possible during these times. There is unavoidably a lot of walking involved in taking in all that Washington, DC has to offer. Those with mobility issues may want to consider bringing a chair, and there are plenty of spots in all of the main areas to stop and rest and people watch for a while. Snack shacks and street vendors are plentiful for refreshments and staying well-hydrated during the summer heat and humidity. All of these attractions have informative websites that will give you more details about what to expect and how to plan your visit.
Some of the most popular museums and attractions require advance reservations. Some are due to demand and others are for security reasons. Many of these special tours and tickets can be arranged through your legislators' offices (one of your two Senators or your Congressman/Congresswoman in the House of Representatives). Just go to their website and you should be able to find a link for the tour coordinator. We'd suggest doing this as far in advance as possible.
The White House tour requires several weeks advance request, as does the US Capitol Building (we are doing that on Saturday as a group). Some of the other attractions that may require advance scheduling are the Library of Congress, the Supreme Court, the National Archives (where the Declaration of Independence is on display), the Bureau of Engraving and Printing, the FBI, the Kennedy Center, the Pentagon, and the new Museum of African American History and Culture. Most of these have a walk-up period each day where you can show up and see if you can get in that same day, but there are no guarantees. Going to the top of the Washington Monument is another that requires a ticket, but it is currently closed for renovations. The website says it will reopen in the spring of 2019, but it also says "closed indefinitely" at the top and we've heard it will be the fall now before it opens. We will update this information if we hear differently.
There are many other museums and attractions to choose from as well. If you are a fan of Abraham Lincoln, then Ford's Theatre and Peterson House will be of interest with an excellent museum, theatre and home tour, and live performances.
Map of the National Mall and Washington, DC area
Travel and tourism website
Many families are extending their stay to make a vacation out of the trip. The hotel, Hilton Crystal City, is in a great location for sightseeing and this was one of the main reasons it was selected as the venue. It is close to the Reagan National Airport with a free hotel shuttle there and also a free shuttle within a 2 mile radius of the hotel.
Crystal City is officially in Arlington, Virginia, just across the river from Washington, DC. The Pentagon is just 2 stops up the Metro subway line and Arlington National Cemetery is just 3. The National Mall, also known as "America's Front Yard" with monuments, Smithsonian museums, the White House, and the Capitol Building, is a short ride on the Metro. Some other popular locations that are easily accessible are Mount Vernon, Old Town Alexandria, the National Zoo, the National Cathedral, the Holocaust Museum and Memorial, Chinatown, Georgetown, the Capital One Arena, and the Washington Nationals Stadium. A large shopping mall and food court, Fashion Center, is 1 stop up at Pentagon City and is connected to the subway station there.
Many of the museums and monuments offer free admission, but there are security checks with bag searches involved at the museums so you may want to keep that in mind when choosing what to bring with you and travel as lightly as possible during these times. There is unavoidably a lot of walking involved in taking in all that Washington, DC has to offer. Those with mobility issues may want to consider bringing a chair, and there are plenty of spots in all of the main areas to stop and rest and people watch for a while. Snack shacks and street vendors are plentiful for refreshments and staying well-hydrated during the summer heat and humidity. All of these attractions have informative websites that will give you more details about what to expect and how to plan your visit.
Some of the most popular museums and attractions require advance reservations. Some are due to demand and others are for security reasons. Many of these special tours and tickets can be arranged through your legislators' offices (one of your two Senators or your Congressman/Congresswoman in the House of Representatives). Just go to their website and you should be able to find a link for the tour coordinator. We'd suggest doing this as far in advance as possible.
The White House tour requires several weeks advance request, as does the US Capitol Building (we are doing that on Saturday as a group). Some of the other attractions that may require advance scheduling are the Library of Congress, the Supreme Court, the National Archives (where the Declaration of Independence is on display), the Bureau of Engraving and Printing, the FBI, the Kennedy Center, the Pentagon, and the new Museum of African American History and Culture. Most of these have a walk-up period each day where you can show up and see if you can get in that same day, but there are no guarantees. Going to the top of the Washington Monument is another that requires a ticket, but it is currently closed for renovations. The website says it will reopen in the spring of 2019, but it also says "closed indefinitely" at the top and we've heard it will be the fall now before it opens. We will update this information if we hear differently.
There are many other museums and attractions to choose from as well. If you are a fan of Abraham Lincoln, then Ford's Theatre and Peterson House will be of interest with an excellent museum, theatre and home tour, and live performances.
Map of the National Mall and Washington, DC area
Travel and tourism website
TRANSPORTATION:
- Hotel parking is discounted at $15 daily.
- There is a free hotel shuttle within a 2 mile radius, including the Metro stop. The shuttle can get busy during peak times, though, and there may be wait times.
- If you are using the free shuttle from Reagan National Airport, you can call the hotel when you get to baggage claim and let them know you are there. They will give you further specific directions on where to meet the shuttle and will notify the driver of a pickup. It also works just to follow the signs to the shuttle area and watch for the Hilton Crystal City shuttle to arrive and stop.
- Crystal City Metro Station provides subway access all over the area and is located 4/10 of a mile from the hotel. It is about a 10 minute walk with good sidewalks in a safe area or you can take the hotel shuttle. You can call the hotel to arrange a shuttle to pick you up there on your return trip.
- Metro website and map and accessibility information.
- Metro Station closure information and alternatives.
- Free Metro maps may be picked up at any station and there are free Apps available for your phone.
- There is a water taxi service available on the Potomac River and the company also provides sightseeing cruises. It is a fun way to get around and see the area from a different perspective. The service area includes the National Harbor, the Wharf, Old Town Alexandria, and Georgetown.
- Taxis and Ubers are plentiful and will be the cheapest option from any of the airports aside from the free hotel shuttle at Reagan. Washington, DC has the special Uber WAV (Wheelchair Accessible Vehicle) service as well and it shows up as an option when using the Uber service in that area. There are more options available there than in some other areas, too, for choosing a specific vehicle size, which is helpful for larger groups and families using Uber.
- If you are arriving via train at Union Station, there is direct Metro service from Union Station to Crystal City, with a transfer from the Red line to the Yellow at Gallery Place station. Ubers are also estimated to be between $7 and $10, and taxis will be readily available outside Union Station.
- The hotel recommended Super Shuttle (1-800-Blue Van) for Dulles travelers, but the reviews are not great.
