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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 agenda for the ASXL Conference and register by July 5.
Feel free to contact Laura Badmaev  ( 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.

VOLUNTEERS NEEDED! Please sign up here.

We hope to see all of you in July!


AЯRE Foundation





Travel & Logistics

Travel & Logistics



Meet our ASXL scientists and physicians.

AЯRE is incredibly fortunate to have these medical doctors and scientific advisors who are passionate about helping ASXL affected families are subject matter experts on ASXL syndromes/research, and review/recommend potential research proposals.


2019 ASXL Conference - AGENDA

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Friday, July 19th

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Professional Day (for Scientists and Researchers; Families are optional) at the Biomedical Science Research Building, University of Michigan, Ann Arbor Campus

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Saturday, July 20th

Medical Research & Family Day at the Hilton Garden Inn, Ann Arbor

Special Guests - THERAPY DOGS!

Biobanking & Registries

  • Simons VIP & ASXL Biobank - sample collection

  • ASXL Registry enrollment

Note: Simons will be creating a video during the conference and families can participate! They will ask questions about the process to obtain a diagnosis, finding a community, and the patient experience.

FaceBase Enrollment

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  • Catered lunch for families and professionals

  • ASXL Family Dinner at Revel & Roll

    • Wheelchair accessible transportation and food will be provided at no charge

    • Adaptive Bowing & Arcade!


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Sunday, July 21st


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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

Biomedical Science Research Building

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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 ( 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:

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). 

Detroit Metro Airport Special Needs Assistance

Transportation/Shuttle to/from airport

To request wheelchair accessible shuttle, follow the instructions under ‘People with Disabilities’ link

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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ARRE has negotiated a group rate to stay at the Hilton Garden Inn. For ASXL families, ARRE will subsidize the rooms for Friday and Saturday nights only at a reduced rate. Families can extend their stay at the regular rate.

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

The Graduate
615 E Huron St, Ann Arbor, MI 48104
(734) 769-2200

Other Hotels:

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

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


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

Ann Arbor Hands-on Museum

Splash Universe

Ann Arbor Art Fair

Please feel free to contact AЯRE Foundation ( at any time if you have any questions or special needs.

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