Registration
This year’s conference will be in-person only.
Selected sessions will be recorded and made available post-conference
Questions?
Contact Registration Support
P: 866-792-5399
(Monday – Friday 8:00 a.m. – 5:00 p.m. Eastern US Time)
BDSRA@sswmeetings.com
Registration Rates
PLEASE NOTE: A unique email address is required for each attendee, including children. For children without a personal email address, please use your own email address with a “+” modifier (such as +1, +2, etc.) added before the “@” symbol. For example, johndoe+1@gmail.com is treated as a unique email address but will still deliver confirmation emails to your primary inbox.
| Adults (18+) | ||
| Adult Parent/Caregiver 18+ (Not Attending SIB Outings) | $235.00 | $250.00 |
| Adult SIB 18+ (Attending SIB Outings) | $235.00 | $250.00 |
| Adult SIB Guest 18+ (Attending SIB Outings) | $285.00 | $300.00 |
| Non-Pharma/Professional | $435.00 | $450.00 |
| Pharma/Industry | $585.00 | $600.00 |
| Batten Affected Loved Ones | ||
| Batten Affected Loved One | $10.00 | $20.00 |
| Children (17 & Under) | ||
| SIB Ages 5 & Under (Not Attending SIB Outings) | $10.00 | $20.00 |
| SIB Ages 6-17 (Attending SIB Outings) | $60.00 | $75.00 |
| Child SIB Guest 17 & Under (Attending SIB Outings) | $120.00 | $130.00 |
All outings and T-shirts* MUST be purchased before June 10.
*T-shirts are complimentary for all SIBs, SIB Guests, and Batten Affected Loved Ones. For everyone else, T-shirts are available for $15.
T-shirts are required for everyone attending the SIB outings.
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 complimentary planned 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 | Medieval Times Dinner & Tournament | Included with registration |
| Saturday | Bowling & Lunch | Included with registration |
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 | Escape Room & Dinner | $20.00 |
| Saturday | Paint & Sip | $10.00 |
All outings and T-shirts* MUST be purchased before June 10.
