Registration Rates
| Family Rates | ||
| Adults (18+) | $50.00 | $60.00 |
| Adult Sibling (18+) | $0.00 | $0.00 |
| Teen Sibling (Age 13-17)* | $0.00 | $0.00 |
| Child Sibling (Age 6-12)* | $0.00 | $0.00 |
| Young Child Sibling (Age 0-5)* | $0.00 | $0.00 |
| Affected Loved One* | $0.00 | $0.00 |
| Guest Rates | ||
| Guest (13+) | $0.00 | $0.00 |
| Guest (Age 6-12) | $0.00 | $0.00 |
| Professional Rates | ||
| Non-Pharma/Professional Medical researchers, scientists, patient advocacy & educational organizations. |
$50.00 | $60.00 |
| Pharma/Industry | $350.00 | $400.00 |
*T-shirts are complimentary for SIBS (Ages 0-17) and Affected Loved Ones.
For everyone else, T-shirts are available for $15. Everyone attending the sibling outings is required to purchase a T-shirt.
Meals
| Family Rates | ||||||
| Adults 18+ | $30.00 | $40.00 | $30.00 | $45.00 | Complimentary | $20.00 |
| Adult Sibling (18+) | $30.00 | $40.00 | $30.00 | N/A | Complimentary | $20.00 |
| Teen Sibling (Age 13-17)* |
$30.00 | $40.00 | $30.00 | N/A | Complimentary | $20.00 |
| Child Sibling (Ages 6-12)* |
$20.00 | $20.00 | $20.00 | N/A | Complimentary | $10.00 |
| Young Child Sibling (Ages 0-5)* |
Complimentary | $0.00 | $0.00 | Complimentary | Complimentary | Complimentary |
| Affected Loved One* | $20.00 | $20.00 | $20.00 | $20.00 | Complimentary | $10.00 |
| Guest Rates | ||||||
| Guest (13+) includes sibling outing | $30.00 | $40.00 | $30.00 | N/A | Complimentary | $20.00 |
| Guest (Age 6-12) includes sibling outing | $20.00 | $20.00 | $20.00 | N/A | Complimentary | $10.00 |
| Professional Rates | ||||||
| Non-Pharma/ Professional Medical researchers, scientists, patient advocacy & educational organizations. |
$30.00 | $40.00 | $30.00 | $45.00 | $60.00 | $20.00 |
| Pharma/Industry | $30.00 | $40.00 | $30.00 | $45.00 | $60.00 | $20.00 |
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 camp, an onsite daycare, so parents can attend the sessions without childcare worries. The outings and camp are supervised by vetted adults.
| Thursday | Swimming & Dinner | Complimentary |
| Friday | Prehistoric Putt Indoor Miniature Golf* & Dinner | SIBs: Complimentary Guests: $10 |
| Saturday | Urban Air Trampoline & Adventure Park & Lunch | SIBs: Complimentary Guests: $40 |
Life Goes On (LGO) Activities
What is the LGO program? BDSRA supports families on 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, fostering connections and friendships that last a lifetime. Each year, the LGO program hosts social events during the Annual Family Conference to help parents navigate grief and the path to finding joy again. Sessions will be held specifically for parents, and some will include other close family caregivers.
| Friday | Museum of American Speed | $15.00 |
| Saturday | Craft & Sip | $10.00 |
