BDSRA Conference

Join us in St. Louis!


Hotel reservations are now being accepted by the Renaissance St. Louis Airport Hotel, site of this year’s Batten family conference, July 14-17.  To reserve your room, please visit .

If you would like to make your reservations by phone, please call 1.800.468.3571 and mention “BDSRA Batten disease” to get the discounted rate of $105 per night.   The conference room block dates are July 13, 14, 15 and 16. If you need additional dates or would like to book a suite, please contact the hotel Reservation Coordinator, Charlotte Tourkakis  or 314.890.3151. Please note that additional dates are based on room availability.  Reservations must be made by June 21, 2016.

Online conference registration is available at:

To see the tentative conference agenda click here

For families seeking financial support to attend conference, one source for potential support is contacting the local Developmental Disability Council. There are Developmental Disability (DD) Planning Councils that serve each state and territory in the U.S. and under the umbrella of “Family Support Services” financial help may be available. To see if family support funds might be available in local regions through the DD council, visit

If you need any assistance locating your county office or need additional information about this year’s conference, please do not hesitate to contact Becky Hetteberg, BDSRA Director of Family Support and Education at 1-800-448-4570 ext. 12 or

Thanks to generous donations the BDSRA will again this year be offering a limited number of conference stipends.  Priority is given to families who have not received funding in the past for the conference, new families, and those who have been unable to attend for several years due to financial stress. Please visit for stipend application forms.

Like the 2016 BDSRA Conference page ( ) for ongoing updates!

Check out the St. Louis Visitor’s Bureau website to explore all St. Louis has to offer

As always, please contact us if you have any questions or 614-768-1159.