GENERAL
What is the SIBs program?
The SIBs Program is an incredible support system created by people who also grew up as “unaffected” brothers and sisters in Batten families. The annual conference is the foundation for the lifelong bonds and connections formed between SIBs, who share a home life that others may not understand.

What is the Life Goes On (LGO) Program?
BDSRA supports families in every step of the uncharted journey through Batten disease. The LGO program brings together parents and caregivers who have lost their child/children to Batten disease. Each year, the Life Goes On program hosts social events during the Annual Family Conference to help parents navigate grief and understand that it is okay for them to find joy again. LGO fosters connections and friendships that will last a lifetime.

What is the Celebration of Life?
The Celebration of Life is a time to honor those we have lost to Batten disease.

REGISTRATION
Are meals included in the registration fee?
The registration includes two lunches, one dinner and coffee service.

I am not available to attend in person. Is a virtual option available?
The conference will be in person only. A limited number of sessions will be recorded and made available for viewing.

What activities have been planned for the SIBs and LGO?
SIBs Activities:
Thursday: Swimming (indoor pool)/Games and an offsite excursion for siblings 21+
Friday: Medieval Times Tournament (Dinner included)
Saturday: Bowling (Lunch included)

LGO Activities:
Friday: Escape Room & Dinner ($20)
Saturday: Paint & Sip activity ($10)

When is the last day to register?
Registration does not close; however, June 10 is the last day to register for events, order T-shirts, and register at the conference early bird rate.

HOTEL
When is check-in and check-out time?
Check-in time is 3 p.m.; check-out time is 12 p.m.

What is the maximum occupancy for the hotel’s guest rooms?
There are a number of room types with the largest occupancy of 5 at The Westin Chicago Lombard. Accessible rooms are limited, so families who need them should secure their reservation as soon as possible and contact the hotel directly at 630-719-8000 with your request.

Which airport is closest to The Westin Chicago Lombard Hotel?

Chicago O’Hare International Airport (ORD)
Distance to Hotel: 16 miles/30 minutes
Transportation options to and from ORD can be found here.

Chicago Midway International Airport (MDW)
Distance to Hotel: 24 miles/45 minutes
Transportation options to and from MDW can be found here.

What parking options are available?
Complimentary parking will be available to all conference attendees.

CHILDCARE
Who oversees affected childcare?
BDSRA hires local care providers (nurses and allied health professionals), as well as volunteers who have experience working with children who have Batten disease. Families must register online for childcare while signing up for the conference. Affected childcare volunteers do not handle the following: feeding, toileting/diapering, and medications. Parents are expected to do these tasks.

When is childcare available?
Complimentary childcare is available for affected loved ones and unaffected children ages one through five. Childcare will be open Friday, July 10 (7:30am–5pm) and Saturday, July 11 (7:30am-5pm). It will close 12-1 p.m. for a lunch break each day. Pre-registration is required.

I’m concerned that my child may have a bad seizure while at the conference. Is medical help available during the conference?
BDSRA alerts local hospitals in advance of the conference to ensure their Emergency Department staff are aware of our presence.