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ASXL Research Symposium

 

We are thrilled that you will be able to join us for the inaugural AЯRE Conference at the University of California Los Angeles!

ASXL Research Symposium at UCLA Luskin Conference Center
425 Westwood Plaza, Los Angeles, CA 90095, United States

Below please find the agenda for the July 27th conference and register by July 6. Feel free to contact Laura Badmaev  (laura@arrefoundation.org) or Dr. Bianca Russell (Bianca.Russell@cchmc.org) with any questions.

We look forward to seeing you in July!

Cheers!

AЯRE Foundation

 

Explore the Conference

 

ASXL Conference - Agenda

Registration

Where to stay

 

ASXL RESEARCH SYMPOSIUM - AGENDA

 
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Medical Clinic & Biobanking:

Geneticists who are familiar with numerous ASXL patients will be available for medical clinic in the morning of July 27th.  Families who would like to be seen should register and express an interest.  Dr. Russell will contact each individual family with their assigned time for medical clinic.  Families will also have an opportunity to provide samples (e.g. blood, saliva, etc.), which will be associated with the ASXL registry for research.

Symposium information:

Above please find the agenda for the ASXL Research Symposium.  Each speaker will have ~20 minutes to present and 5-10 minutes for Questions and Answers.

If there are certain questions you have for specific speakers, you can also email AЯRE Foundation (info@arrefoundation.org) in advance to raise these during the sessions.

Support & Services:

There will be volunteer Emergency Room Registered Nurses available at the event to assist families during the speaker presentations so that the families can pay attention to the speakers.

It is imperative that you pre-register ASAP so AЯRE can ensure to provide the proper amount of staff to support your family.


Register by July 6th 2018

Registration


Where to stay

Location of the ASXL Research Symposium:

UCLA Meyer & Renee Luskin Conference Center
425 Westwood Plaza, Los Angeles, CA 90095

The hotel and conference are both located on the campus and within walking distance of each other. In case of emergency, the UCLA hospital is also in proximity of the conference center.

TIP: Download the UCLA Campus MAP

For hotel guests: Complimentary parking will be available in the garage under the Luskin Conference Center from July 26-28th.  Upon entry, collect a ticket, which will be validated at the front desk.  Additional nights will be charged to the hotel guest.

For local residents/other: Vehicles with handicap plates/placard will receive discounted parking (~$8) and other vehicles will be charged ($12/10 hours) at the Luskin Center.  Parking is very limited so if space it not available, please park in Structure 8, Level 3; from Level 3, walk across the bridge that connects to the Luskin Center.  Another option: park in Structure 8, Level 4 and take the elevator down to Level 3.  Please see the map below to find the Luskin Center and P8 (Parking Structure 8).

 

 
 

Useful Information

Transportation

Flights:

Prepare in advance to make your travel experience will go smoothly.  Contact your airline for assistance a few days before your trip.  Airlines may have one of their employees meet you and guide you through security.  You can also request assistance when you land at your final destination.

Contact TSA Cares (https://www.tsa.gov/travel/passenger-support) for assistance with the screening process and special accommodations.

Make sure that all your medicines are labeled and bring the doctors orders with you, including for g-tube formula.  Also, remember to bring emergency medications (e.g. diazepam). 

You may want to consider bringing music, a favorite toy, or other items for comfort: https://funandfunction.com/sensory-strategies/travel-solutions.html

Transportation to the Conference Center / Car Rental:

If you are arriving by rental car, the Luskin Conference Center is approximately 12 miles north of Los Angeles International Airport (LAX).  Take the San Diego Freeway (I-405) North and exit at Wilshire Boulevard East. Turn right onto Wilshire Boulevard and proceed a half mile to Westwood Boulevard. Turn left and the UCLA Luskin Conference Center, a premier Los Angeles meeting venue and hotel, is located one mile ahead at end of the turnaround.

If you are arriving by Uber/Lyft/Taxi, provide the following address as your destination: 425 Westwood Blvd., Los Angeles, CA  90095

Wheelchair accessible transportation: The following companies provide wheelchair accessible transportation services to and from the airport. It is recommended that you call in advance for transportation arrangements and rates.

Bell Cab: www.bellcab.com

Supershuttle: www.supershuttle.com

B&W Limo: info@bwlimos.com or 818-599-0438

Driving Directions & Transportation Options: https://luskinconferencecenter.ucla.edu/about/campus-map-parking/

Accommodation:

UCLA has graciously offered to split the cost of hotel rooms for our ASXL families at a rate of $124/night. Check in time is 4pm and check out time is 12pm/noon.

This rate will be available for July 26th through July 28th.  If you plan to extend your trip, you can receive a semi-discounted rate of $249 on July 25, 29, & 30th. To book any additional nights outside of those dates, please contact the Luskin Conference Center Reservations team at 855-522-8252.

The Luskin Conference Center hotel has reserved accessible/ADA rooms for guests.  If you have additional needs for roll-away bed ($30/room/night; only available for King bed rooms), crib, extra pillows, or other needs, please submit them with your request or contact AЯRE for assistance. The hotel has vending machines available on each floor and families can reserve a refrigerator for a fee ($20/room/night).

The hotel does not have general laundry facilities available to the public, but guests of the hotel can send items out to be laundered from their rooms. If laundry is put out by around 9am, it should be returned to the guest room around 4-5pm.

The conference center where the ASXL Research Symposium is being held is within the hotel.

Meals:

On Friday, July 27th, 2018, there will be a complimentary buffet lunch from 12-1pm for all speakers and families at the Conference Center.  Please register with your preferences for this event by July 6th. http://bit.ly/asxlconferenceregistration

On the same evening, there will be an informal “Bring Your Own” (BYO) dinner for families on the UCLA campus.  We will also provide the option to order take out from a local restaurant (e.g. In & Out Burger).  More details will be provided at a future point in time via email.

The UCLA Medical Center campus has a cafeteria that is available for other meals.  The hotel has a restaurant, Plateia (http://plateiaucla.com), which is open to the public.  There are also dining halls in the on campus housing and the Ackerman Union, which has a variety of eateries as well. https://www.uclahealth.org/reagan/dining-commons

The UCLA Bookstore carries small sundries and a grocery section.  A few blocks into Westwood Village, there is also a CVS, Target, & Trader Joe’s.

Weather:

Los Angeles July weather averages between 81-86 degrees Fahrenheit / 27-30 degrees Celsius during the day and falls to 62-66 degrees Fahrenheit / 16-19 degrees Celsius in the evening.  Please note that these are averages so temperatures may climb to the high 90s – be prepared. Remember to use sun protection (e.g. sunscreen, hats), and stay hydrated to reduce any medical risks.

Things to do in Los Angeles

Shopping and Dining:  Westwood Village is within a 10 minute walking distance from the Luskin Conference Center. It is an authentic Los Angeles neighbourhood that offers several opportunities for shopping and dining.  https://luskinconferencecenter.ucla.edu/about/discover-los-angeles/

Please feel free to contact AЯRE Foundation at any time if you have any questions or concerns.  We are thrilled for you to be part of our inaugural AЯRE Conference and look forward to meeting with you in July!

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