Moebius Syndrome Foundation Administration


11th Moebius Syndrome Conference

Where: North Bethesda, Maryland
When: 18-Jul-14 01:00 PM until 20-Jul-14 01:00 PM

11th Moebius Syndrome Conference



July 18 - 20, 2014

Bethesda North Marriott Hotel & Conference Center

5701 Marinelli Rd 

North Bethesda, Maryland 20852

Plan to attend the 11th Moebius Syndrome Conference, July 18-20, 2014 just outside of DC in North Bethesda, Maryland. 

 Read the conference brochure and register for the conference by mail

 Go to the conference website and register for the conference online

NEW: Tentative Schedule of Sessions

NEW:  Discount car rental from Enterprise for conference attendees - Check special website

TEEN BOWLING: If you registered online, please complete the consent form for teen bowling and either email it to or mail to PO Box 20354, Oakland CA 94620.  If you have already registered and want to register your teen for bowling, complete the form and return it with $20, or call 510 304-2302 to pay by credit card. 

2014 Conference Sponsorship & Donation Opportunities

Please consider supporting the 2014 Moebius Syndrome Conference with a sponsorship or donation. Please consider fundraising on behalf of the Moebius Syndrome Foundation.

Your generous contribution will help with the cost of the conference or the conference scholarship fund. The Moebius Syndrome Foundation is a 501 c (3) charitable organization, and your sponsorship will be tax-deductible to the fullest extent of the law. EIN is 13-3753992.

Please read or download the attached Sponsorship/Donation form and Letter. You can use this sample letter or write your own.

The Registration costs for the 2014 Moebius Syndrome Conference are:

Early Registration (February 2014 through June 18, 2014):

Adult $220

Teen (13-17) $170

Child (4-12) $100

Standard (June 19, 2014 through July 12, 2014):

Adult $245

Teen (13-17) $190

Child (4-12) $110

Onsite (at Conference July 18 - 20, 2014):

Adult $260

Teen (13-17) $205

Child (4-12) $120


There is no registration charge for children under 4, or who are tube-fed.


Conference Scholarships

A limited number of scholarships for first time attendees with financial need (either an adult with Moebius syndrome or a parent of a child with Moebius syndrome) will be offered in the amount of $500. It will cover registration for one adult ($220) plus $280, to be used towards the registration fee(s) of other family members and/or travel expenses. (Scholarships will be awarded in the order received, so it is very important to submit your registration very early.)

NEW:  Financial Assistance with Conference Transportation

If you have financial need and are a parent with a child 17 and under who has Moebius syndrome, you may apply for free flights to and from the conference through Miracle Flights for Kids.  Your child must have a consult appointment at the conference with one of the physicians.  If you are interested in applying, call Miracle Flights for Kids first to determine if you meet their financial eligibility criteria at 702 261-0494.  Your application can be made no earlier than May 18th.  If you do apply for flights from Miracle Flights for Kids, you also need to email in order to obtain the required letter from the physician you have an appointment with.  Check out Miracle Flights for Kids at  


  Conference Hotel

 UPDATE:  The conference hotel is the Bethesda North Marriott Hotel and Conference Center (see below).  If you are unable to make reservations at the conference hotel for Sunday or Monday nights (July 20 & 21), or earlier, the Hilton Garden Inn at 7301 Waverly St, Bethesda MD 20814 (just a mile or so away from the conference hotel) is offering a discounted rate of $149 per night ($163 with tax).  To make a reservation at the Hilton Garden Inn, call 888 440-1834 with code MSF, or follow this link to make a reservation online:   Moebius Syndrome Foundation Reservations at Hilton Garden Inn Bethesda.

The conference hotel is the Bethesda North Marriott Hotel and Conference Center.  All sessions and consults will take place here.  Special hotel rate is $109 + plus tax per night, about $123 total. To make hotel reservations at the conference rate, go to the special link for the Moebius Syndrome Conference: or call the hotel at 1-800-228-9290 or 1-301-822-9200.


Consultations and research opportunities

There will be opportunities for adults and children with Moebius syndrome, and their families, to participate in evaluations (consults) or research studies. Most will take place during the conference, and are limited in number. The appointments are made as registration is received, so it is important to register early. Go to the Conference Website ( or check the Conference Brochure  for more information. 

Child Care Child care will be available for children ages 6 months to 12 years who are registered for the conference. The professional child care will be provided by Kiddie Corp Inc.

There are two steps to sign children up for child care: