THURSDAY, JULY 18

Noon-8:00pm
Conference Registration and Scientific/Medical Studies Registration | Platte River

7:30-9:15pm
SIBS Pizza and Pool Party: All SIBS 6 years old and older are invited to a Pool Party! Come meet new SIBS, connect with old friends, and have a great time. (Lifeguards will be provided)
Pool

9:30-11:00pm
Adult SIBS Outing (21+)
Meet in Hotel Lobby

FRIDAY, JULY 19

7:45-8:30am
Breakfast on your own

9:00-9:45am
Friday Morning Kickoff All SIBS gather at the Opening Session before being dismissed to their Icebreaker Session.
Colorado Ballroom A & B

10:00-10:45am
SIBS Icebreaker Session A great session for all SIBS to wake up and start the day with fun filled games and a few introductions
Colorado Ballroom C & D

10:45-11:00am
Break

11:00am-12:00pm
SIBS Research Session Meet with scientists for Q&A along with learning the latest in testing, trials and research that are currently taking place and what is in store for the future. Age appropriate discussions and activities.

  • Ages 6-9: Pikes Peak

  • Ages 10-13: Grays Peak

  • Ages 14-17: Maroon Peak

  • 18 & older: Bennett Peak

12:00-1:00pm
Lunch Buffet (meal ticket required)
Colorado C & D

1:00-3:00pm:
SIBS Group Break-Out Sessions This is an opportunity to meet and get to know other SIBS their own age in individualized age discussions and activities

  • Ages 6-9: Pikes Peak

  • Ages 10-13: Grays Peak

  • Ages 14-17: Maroon Peak

  • 18 & older: Bennett Peak

2:00-3:00pm
Bereavement Session for SIBS An opportunity for those who have lost a sibling to spend time with other bereaved SIBS and view the Batten Disease Memorial
Telluride B

3:00-3:15pm
Break

3:15-4:45pm
SIBS Group Break-Out Sessions This is an opportunity to meet and get to know other SIBS their own age in individualized age discussions and activities

  • Ages 6-9: Pikes Peak

  • Ages 10-13: Grays Peak

  • Ages 14-17: Maroon Peak

  • 18 & older: Bennett Peak

4:45-9:15pm
Load Buses for SIBS Outing to Boondocks Come join the fun! The SIBS group will enjoy a night of fun with dinner and 3 hours to play. Activities include: bowling, laser tag, arcade games, miniature golf, bumper boats, Go-Karts, Rookie Track, and a ropes course! All games and activities are included, no cash is needed. (Dinner provided) (SIBS Shirts Required)
Meet in Hotel Lobby at 4:45pm

9:15pm
SIBS return from Boondocks Any child under the age of 13 will have to be picked up by a guardian
Meet in Hotel Lobby

 

SATURDAY, JULY 20

7:45-8:45am
Breakfast on your own

8:45am-1:00pm
Load Buses for SIBS Outing to The Denver Museum of Nature & Science: The Denver Museum of Nature & Science is the Rocky Mountain region’s leading resource for informal science education. A variety of exhibitions, programs, and activities help Museum visitors experience the natural wonders of Colorado, Earth, and the universe. The SIBS group will get the opportunity to experience the museums exhibits which include: Prehistoric Journey, Expedition Health, Gems and Minerals, Space Odyssey, Wildlife Exhibits, Egyptian Mummies, Our Senses and Leonardo da Vinci: 500 Years of Genius. (Lunch provided) (SIBS Shirts Required)
Meet in Hotel Lobby at 8:45

1:00pm
SIBS return from The Denver Museum of Nature & Science - Any child under the age of 13 will have to be picked up by a guardian
Meet in Hotel Lobby

1:00pm-3:00pm
SIBS Break-Out Session Closing session for the weekend

  • Ages 13 & older: Big Thompson

  • Swimming Ages 6-12: (Lifeguards will be provided) Meet at Pool

3:00-5:00pm
SIB/Parent Panel Parents are encouraged to come and ask questions they may have about their SIBS. It is important to note that during the SIB/Parent panel, other than the SIBS on the panel, SIBS are not allowed in the room. Parents can freely ask questions about their SIB. As a response, the SIBS on the panel do NOT discuss anything spoken about in confidence by the other SIBS. They will make generalized statement that many other SIBS have made or give their own personal example as a response. The SIB/Parent panel will also NOT discuss anything spoken about in the panel to other SIBS.
Vail

5:00-6:00pm
Preparation for the Kid’s Parade SIBS and their loved ones affected by Batten disease get decked out in themed accessories for this special event.
Platte River Foyer

6:00-6:30pm
Kid’s Parade Our loved ones affected by Batten disease are announced and escorted by their siblings as they make their way into the ballroom
Ballrooms A- D

6:30-8:00pm
Banquet and Program (meal ticket required)
Ballrooms A- D

8:00-11pm
Dance Party The ultimate dance party and the SIBS Dollar Dance
Ballrooms A- D

SUNDAY, JULY 21

8:00-11:00am
Conference Registration Open
Platte River

9:00-10:00am
Breakfast (meal ticket required)
Colorado Ballroom A & B

10:00-11:00am
Celebration of Life: This reflective ceremony honors the memories of loved ones lost to Batten disease
Telluride A & B

11:30am
Farewells