PROGRAMMING
Q: What is the SIBs program?
A: 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.
Q: What is the Life Goes On (LGO) Program?
A: 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’ll last a lifetime.
REGISTRATION
Q: Why is there a registration fee?
A: Due to increasing costs, it is now essential that we charge a registration fee. Thanks to the generosity of several sponsors, the banquet dinner will be included for Batten families.
Q: Who is charged a registration fee?
A: The registration fee is for all adults who attend the conference in person or virtually.
MEALS
Q: What meals are included during the conference?
A: The Embassy Suites has a full breakfast buffet for overnight hotel guests 6-9am (weekdays) and 7-10:30 am (weekends). Guests who are not staying at the hotel may purchase a breakfast ticket at the Front Desk for $20 plus tax per person. Beverages will be provided during designated breaks. Lunch will be available for pre-purchase when you register. Meals are identified below.
Q: What is the daily menu?
A:
FRIDAY: LUNCH Buffet: Pasta (with & without gluten), red sauce without meat, meat sauce, alfredo, Caesar salad w/dressing & crotons on the side, grilled chicken strips, garlic bread & gluten-free bread option, apple sauce, dessert, lemonade, iced tea, water.
SATURDAY: LUNCH: Boxed Lunch
SATURDAY: DINNER PLATED (KIDS): Chicken Tenders, French Fries, Fresh Fruit, apple or orange juice.
SATURDAY: SOFT FOODS DINNER PLATED: Chopped Beef Brisket, Macaroni and Cheese, Broccoli and cheese rice casserole, carrot cake, cheesecake, corn bread & rolls, iced tea, water.
SATURDAY: STANDARD DINNER PLATED: Garden Salad with Creamy Chipotle Dressing, Smoked Beef Brisket, Pulled Pork Baked, Macaroni and Cheese, Molasses Baked Beans, corn bread, rolls, dessert, iced tea and water.
SATURDAY: VEGETARIAN DINNER PLATED: Garden Salad with Creamy Chipotle Dressing, Pasta Primavera, rolls, dessert, iced tea and water.
