Thursday, July 18

8:00am-4:00pm
Golf Outing
Coordinated by Randy Royalty

8:00am-4:30pm
Board Meeting
Vail

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

6:30-7:30pm
Grandparent/Extended Family Happy Hour
Grandparents, aunts, uncles, and all other adult extended family members come together to connect and have a good time. (Light appetizers and a cash bar will be available)
Hotel Bar Area

6:00-7:30pm
New Family Meet and Greet
Families new to the conference meet with BDSRA Family Liaison, Tracy Kirby, and their buddy families to talk about what to expect over the next three days and get to know one another. Joe Vigil, PhD, a bereaved parent, private practitioner, and rehabilitation psychologist, will also join this session for families new to our conference and Batten disease.
Big Thompson

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

7:30-9:30pm
Welcome Reception
All conference attendees welcome! (Light snacks and a cash bar will be available)
Colorado Ballroom A & B

9:00pm-Midnight
Texas Hold’Em Poker Tournament
All conference attendees are invited to participate in a Texas Hold’Em Poker Tournament
Clear Creek

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

 

 

Friday, July 19

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

8:30am-6:00pm
Conference Registration and Scientific/Medical Studies Registratio
Platte River

8:00am -8:45am
First Time/Newly Diagnosed Session
Joe Vigil, PhD
, a bereaved parent, private practitioner, and rehabilitation psychologist, answers your questions about conference and Batten disease.
Big Thompson

8:15am -8:45am
Presentation of the New Batten Disease Memorial
Please join us for the dedication of the new Batten Disease Memorial commemorating those lost to Batten disease.
Telluride B

8:30am-Noon
Childcare
Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and SIBS 2-5 years old.
Snowmass, Breckenridge, Winter Park, Durango, Steamboat

9:00am- 10:00am
Announcements and Opening Session:
Welcome New
BDSRA Executive Director, Tauna Batiste
Keynote Speaker Dr. Derek Weaver

Dr. Weaver will share his experience as both a Batten SIB and a physician that sees Batten patients.
Colorado Ballroom A & B

10:00am-10:00pm
The Batten Disease Memorial
is on display throughout the weekend for reflection and remembrance.
Telluride B

10:15-11:45am
Breakouts by Type of Batten Disease
These sessions are for parents to meet one another and talk about the unique challenges they face.

  • CLN1 Moms Clear Creek

  • CLN1 Dads Big Thompson

  • CLN2 Moms Vail

  • CLN2 Dads Colorado Ballroom B

  • CLN3 Moms Aspen

  • CLN3 Dads Colorado Ballroom A

  • CLN5-8 Moms Telluride A

  • CLN5-8 Dads Cherry Creek

  • Undiagnosed Moms Boulder Creek

  • Undiagnosed Dads Platte River

10:15-11:45am
Grief and Family Session
Bereaved family members can meet with Joe Vigil, PhD, a bereaved parent, private practitioner, and rehabilitation psychologist to talk about the complexities of grief and share their experiences.
Longs Peak

10:15-11:45am
Grandparents and Extended Family Peer Support
Grandparents, aunts, uncles and others closely involved with Batten families share their experiences with each other.
Blanca Peak

Noon-1:00pm
Lunch (meal ticket required)
Colorado Ballroom C & D

1:00-5:00pm
Life Goes On Outing
A special time for parents (only) who have lost a child to Batten disease to do something fun together. This year will be a Denver City Overview Tour with stop at Cherry Creek. A knowledgeable guide will whisk you around to see top urban attractions, including the State Capital, Union Station, lower Downtown, Denver Civic Park and the Denver Art Museum.
Meet in Hotel Lobby

1:00-5:00pm
Childcare
Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and SIBS 2-5 years old.
Snowmass, Breckenridge, Winter Park, Durango, Steamboat

1:15-2:15pm
CONCURRENT SESSIONS

Physical Therapy for Batten Patients Danielle Peifer, PT, DPT from Nationwide Children’s Hospital will talk with families about the importance of physical therapy for Batten patients covering such topics as transfers, body mechanics, and equipment. There will be plenty of time for questions and demonstrations.
Clear Creek

Music Therapy 101
Chiltern Music Therapy therapist, Rebecca Atkinson, will discuss the impact music therapy can have and work with parents and extended family members to teach them techniques to use at home.
Cherry Creek

Partnering with BDSRA to Create a Lasting Legacy For Your Child: Parent panelists Heather Dainiak, Tony and Katie Ferrandino, and Bob Jensen will share their personal stories of their desire to make a difference and have an impactful legacy in their children’s memory. Panelists will share how the larger community can also participate in remembering their child by supporting BDSRA’s mission. The session will also feature a Q&A moderated by BDSRA Executive Director, Tauna Batiste and fundraising professional Amy Funk of Ter Molen Watkins & Brandt, LLC to answer questions about how you can create a community around your child’s legacy.
Big Thompson

2:30-3:30pm
CONCURRENT SESSIONS

Lifetime Education in Batten Disease: The JNCL Childhood Dementia and Education textbook is here! Join contributors Bengt Elmerskog, Anne-Grethe Tøssebro Heather Adams, PhD, Rebecca Atkinson, Linn Sophie Rian, and Ida Holmen. Together they will share highlights from the book and the overall JNCL and Education Project, and will answer your questions about lifetime education for our loved ones with all forms of Batten. Cherry Creek

Realm of Caring Presents: Cannabinoid Therapy Support, Education & Research for Batten Disease. Courney Collins, Education Director at the Realm of Caring, will answer your questions regarding the use of cannabinoids for Batten children and discuss their current research efforts.
Big Thompson

3:45-4:45pm
Breakouts by Type of Batten Disease
These sessions are for parents to meet one another and talk about the unique challenges they face.

  • CLN1 Moms Clear Creek

  • CLN1 Dads Big Thompson

  • CLN2 Moms Vail

  • CLN2 Dads Colorado Ballroom B

  • CLN3 Moms Aspen

  • CLN3 Dads Colorado Ballroom A

  • CLN5-8 Moms Telluride A

  • CLN5-8 Dads Cherry Creek

  • Undiagnosed Moms Boulder Creek

  • Undiagnosed Dads Platte River

3:45-4:45pm
Grandparent and Extended Family Ask-A-Researcher
Join us for an hour of Q&A with Dr. Jon Cooper, from Washington University School of Medicine. Dr. Cooper will answer your questions about Batten disease, its progression, and the latest research.
Blanca 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

6:00-7:15pm
Dinner Buffet (meal ticket required)
Colorado Ballroom C & D

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

8:00-10:00pm
Trivia game
A fun evening of team-based trivia
Aspen

 

 

Saturday, July 20

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

8:00am-6:00pm
Conference Registration and Scientific/Medical Studies Registration
Platte River

8:15am- 8:45am
Genetics and Batten 101: Hemanth Ramesh Nelvagal, PhD and Keigo Takahashi from Washington University School of Medicine will conduct a brief lecture on genetics basics. (Coffee, tea, and water will be provided)
Colorado Ballroom A & B

8:30am-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 8:30

8:30am-Noon
Childcare: Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and SIBS 2-5 years old. Snowmass, Breckenridge, Winter Park, Durango, Steamboat

9:00-9:45am
Clinical Trial and Translational Research Update: BDSRA Board Member Dr. David Pearce from Sanford School of Medicine will provide an overview of current and upcoming trials (Coffee, tea, and water will be provided)
Colorado Ballroom A & B

9:45am-Noon
Batten Research Overview - Researchers share latest basic research findings (Coffee, tea, and water will be provided)
Colorado Ballroom A & B

10:00am-10:00pm
The Batten Disease Memorial is on display throughout the weekend for reflection and remembrance.
Telluride B

10:00am-10:45am
Advocacy Overview
Steve Silvestri
from the Everylife Foundation will give an overview of Advocacy and help participants craft their personal story.
Big Thompson

11:00am- Noon
Call to Action
Interested in making a legislative difference now? Join us to learn about Newborn Screening and the action steps we can take as a community to ensure Batten is included in the future.
Big Thompson

Noon-1:00pm
Lunch
(meal ticket required)
Colorado Ballroom C & D

1:00-2:00pm
Research Open House & Poster Session
View posters outlining the work of Batten researchers and industry partners from all over the world. Researchers will be on hand to answer questions. (Coffee, tea, and water will be provided)
Aspen

1:00-3:00pm
Pet Therapy for affected children
Snowmass, Breckenridge, Winter Park, Durango, Steamboat

1:00-5:00pm
Childcare
Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and SIBS 2-5 years old.
Snowmass, Breckenridge, Winter Park, Durango, Steamboat

3:00-5:00pm
Music Therapy for affected children
Clear Creek

2:30-3:45pm
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

4:00-5:00pm
BDSRA Board of Directors Updates & Meet the New Executive Director
The BDSRA Board and Committees will give updates from their meeting. Additionally this year, there will be time to meet the new Executive Director, Tauna Batiste. At two months in the role, she will share what she sees as opportunities for BDSRA so far.
Vail

5:00-6:00pm
Preparation for the Kid’s Parade
Our Batten kids get decked out in themed accessories for this special event
Platte River Foyer

6:00-6:30pm
Kid’s Parade
Affected children are announced and escorted by the siblings as they make their way into the dining room

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

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

 

 

Sunday, July 21

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

8:00-11:30am
Childcare
Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and SIBS 2-5 years old.
Snowmass, Breckenridge, Winter Park, Durango, Steamboat

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

10:00-11:00am
First Time/Newly Diagnosed Families Decompression Session
This session, led by Joe Vigil, Ph.D., encourages conference attendees
to discuss their experiences during the weekend and thoughts about
the future
Big Thompson

11:30am
Farewells