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?
Thanks to a generous sponsor, Saturday’s dinner banquet is complimentary to all Batten families. Beverages will be provided during designated breaks. Due to rising costs, there is a fee for additional meals, which can be purchased when you register to attend the conference. The price chart for meals can be found on the Registration page. Pre-registration is required.

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 – Thursday: Swimming (indoor pool)/Games and an offsite excursion for siblings 21+
Friday: Games & Prehistoric Putt Indoor Miniature Golf (Dinner is included.)
Saturday: Urban Air Adventure & Trampoline Park (Lunch is included.)
LGO – Friday: Tour of the Museum of American Speed ($15); Saturday: Sip & Create Craft activity ($10)

HOTEL
When is check-in and check-out time?
Check-in time is 4 p.m.; check-out time is 11 a.m.

What is the maximum occupancy for the hotel’s guest rooms?
The maximum occupancy permitted is four guests. Connecting rooms are limited, so families who need them should secure their reservation as soon as possible and contact the hotel directly at 402-474-7474 with your request.

Which airport is closest to The Lincoln Marriott Cornhusker Hotel?
The Lincoln Airport (LNK) is 5 miles/15 minutes from the conference hotel. Currently, United is the only airline that utilizes this airport. Complimentary shuttle service is available upon request (6am-11pm). Contact the hotel front desk staff at 402-474-7474 to schedule the complimentary shuttle service after landing.

Eppley Airfield (OMA) in Omaha is 62 miles from the conference hotel. Shuttle service providers may be accessed here. Rideshare providers may offer better rates.

What parking options are available?
Valet parking ($24/day) is available at the Lincoln Marriott Cornhusker Hotel. Self-parking is also available for $13.50/day. Electric car charging stations are subject to availability. Off-site parking meters and garages can be found around downtown Lincoln (0.2 miles from the hotel).

Oversized vehicles can be parked on the west side of the hotel, on 12th Street, between “L” and “M” Streets. Upon arrival, guests with oversized vehicles need to stop at the Front Desk to get one of the parking placards to be placed in the vehicle’s front window.

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 11 (7:30am–5pm) and Saturday, July 12 (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.