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ASXL Conference 2019

We are thrilled to announce the 2nd ASXL Conference at the University of Michigan, Ann Arbor!

Below please find the draft agenda for the ASXL Conference and register by July 5.
Feel free to contact Laura Badmaev  (laura@arrefoundation.org) with any questions.

Registration is FREE of charge for all families.

For families and professionals that plan to attend virtually via livestream and/or live polling, please also register for this conference.

We hope to see all of you in July!

Cheers!

AЯRE Foundation

 
 

University of Michigan

Ann Arbor, MI 48109

 

2019 ASXL Conference - DRAFT AGENDA

 
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Friday, July 19th

Family Day

  • Meet & Greet - Opportunities to connect with other ASXL families and break out by syndrome

  • Informational Workshops ( e.g. Augmentative Communication, Special Needs Trust & Conservatorship)

  • Parent Panel

  • Equipment & Therapy Exhibits

  • ASXL Family Dinner

Professional Day (for Scientists and Researchers)

  • Genetics

  • Modulation of H2A Monouniquination and Targeting

  • Developmental Models and Mechanisms

  • Models to Investigate Clinical Features


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Saturday, July 20th

Medical Research & Family Day

Guest Presentations:

  • Comprehensive Evaluation of Clincial Features for ASXL Related Disorders

  • Gastroenterology & Growth

  • Sleep

  • Genetics

  • Pallataive Care

  • Ears/Nose/Throat

  • Endocrinology

  • Behavioral issues

Focus groups

  • Share experiences on different subjects with specialist facilitators

  • Q&A with medical specialists from guest presentations

Biobanking & Registries

  • Simons VIP & ASXL Registry - sample collection

  • Registry enrollment

Meals:

  • Catered lunch for families and professionals

  • ASXL Family Dinner


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Sunday, July 21st

SUNDAY FUNDAY!

  • Fun activities for families in the park & therapy dogs

  • BBQ Lunch

Preliminary List of Speakers:

Wendy Chung (Columbia - New York)

Rob Hevner (UCSD - California)

Tomek Cierpicki (University of Michigan - Michigan)

Kirin Nistala (Regeneron - New Jersey)

Rosanna Weksberg (Toronto - Canada)

Elena Ezhkova (Mount Sinai - New York)

Rob Klose (Oxford - UK)

Gemma Cavill (Northwestern - Chicago)

Jürg Müller (Germany)

Jonathan Lipton (Harvard)

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TRAVEL & LOGISTICS

 
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Friday, July 19th & July 20th - Family Day Events

Hilton Garden Inn
1401 Briarwood Circle
Ann Arbor, MI 48108
(734) 585-0305 

Friday, July 19th - Professional Day

University of Michigan, Ann Arbor

North Campus Research Complex (NCRC), Building 18

2800 Plymouth Rd

Ann Arbor, MI 48109

DOWNLOAD - University of Michigan North Campus Map

Directions: https://ncrc.umich.edu/maps-directions

Accessible Parking: http://ltp.umich.edu/parking/fs-accessible.php

 
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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 Hilton Garden Inn is approximately ~25 miles from the Detroit Airport (DTW). 

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.

Creative Mobility Group Call 248-577-5430 for ADA van rentals

Metro Cars Call 800-456-1701 for ADA transport to/from the airport

S&L Transportation Call 800-823-9044 for ADA transport

 
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Accommodation:

ARRE will negotiate a group rate for the ASXL families to stay the Hilton Garden Inn. Stay tuned for more details.

Hilton Garden Inn
1401 Briarwood Circle
Ann Arbor, MI 48108
(734) 585-0305 

Kensington Hotel
3500 S. State St
Ann Arbor, MI 48108
(734) 761-1799

Holiday Inn Express
600 Briarwood Circle
Ann Arbor, MI 48108
(734) 761-2929

The Graduate
615 E Huron St, Ann Arbor, MI 48104
(734) 769-2200
https://www.graduatehotels.com/ann-arbor/

Meals: Catered meals will be provided at the conference events. There will also be family dinner events (TBD).

Weather:

Ann Arbor July weather averages between 82-24 degrees Fahrenheit / 27-29 degrees Celsius during the day and falls to 60-62 degrees Fahrenheit / 15-17 degrees Celsius in the evening.  Please note that these are average temperatures so be prepared. Remember to use sun protection (e.g. sunscreen, hats), and stay hydrated to reduce any medical risks.

Things to do in Ann Arbor

https://www.visitannarbor.org/splash/stay

Ann Arbor Hands-on Museum

Splash Universe

Ann Arbor Art Fair


Please feel free to contact AЯRE Foundation (info@arrefoundation.org) at any time if you have any questions or special needs.

 
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