Registration
Due to increased costs, the registration fees outlined below have been implemented.
Thanks to the generous donation of sponsors, the banquet will be complimentary for families.
We hope the registration fee will not deter anyone from attending
in person and look forward to seeing you this summer!
NOTE: In-Person registration has closed. Only Virtual registration is available at this time.
QUESTIONS?
Contact Registration Support
P: 866-792-5399
(Monday -Friday 8:00 a.m.- 5:00 p.m. Eastern US Time)
BDSRA@sswmeetings.com
In-Person Attendees
SIBs ACTIVITIES
What is the SIBs program? From virtual holiday parties to the BDSRA Annual Family Conference, siblings of all ages can connect with others like themselves through the BDSRA SIBs program. SIBs can join in panel discussions and grief chats and enjoy planned recreational and social activities throughout the conference that blossom into lasting friendships. SIBs ages 6 and older can take part in day trips to local attractions with their peers. The younger SIBs, ages 5 and under can join in the fun activities in the Teddy Bear Club, a special on-site daycare, so parents can attend the sessions without childcare worries. Both the outings and Teddy Bear Club are supervised by vetted adults.
| Pool Party & Cookout – Thursday | Complimentary |
| Andy B’s Bowl/Social – Friday (Includes dinner) | Complimentary |
| The Battlefield (Nerf wars) – Saturday (Includes lunch) | Complimentary |
Life Goes On (LGO) ACTIVITIES
What is the 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 understanding that it is okay for them to find joy again. Sessions will be held specifically for parents, and some will include other close family caregivers. LGO fosters connections and friendships that will last a lifetime.
| Texas Motor Speedway – Friday (LGO Parents Only) | Complimentary |
| Diamond Art, Mimosas & Mocktails – Saturday | $20 each |
JUNE 19 is the last day to order T-shirts and register for the SIBs and LGO activities.
Virtual Attendees
