Agenda
The agenda is subject to change.
All times are listed in Central Daylight Time (CDT).
THURSDAY, July 9, 2026
| 9:00am – 5:00pm |
Board Meeting Closed Meeting (BDSRA Board Members Only) |
| 3:00pm – 7:00pm | Registration The Registration Desk is your first stop to collect your conference bag, which includes your T-shirt and nametag. It’s also the place to get directions, event updates, schedules, volunteer information, accessibility assistance, details about SIBs and childcare, help with lost and found, and connect with our team. |
| 6:00pm – 7:00pm | New Family Orientation (First Time Attendees) If this is your first conference, please join this gathering where you can meet experienced attendees. They’re available to answer your questions, support you as needed, and help you feel welcome. |
| 6:00pm – 7:00pm |
Grandparents & Extended Family Gathering Please join other grandparents and support-people for happy hour before the Family Reunion. This is the opportunity to make new friends and reconnect with those you know. |
| 6:30pm – 9:00pm | SIBs – Pool Party and Dinner SIBs of all ages are invited to share a meal, play games, and swim at the hotel swimming pool. Newcomers can gather at the New Family Orientation and SIB Leaders will meet you there for a meet and greet and overview of the program. They will escort your children to the Pool Party. |
| 7:00pm – 9:00pm | Welcome Reception – Family Reunion Everyone is welcome to join the Family Reunion. Reconnect with friends, meet others from the community, and enjoy light refreshments. A brief welcome from BDSRA will be shared. |
| 9:00pm – 11:30pm | SIBs (21+) Offsite After hosting the younger SIBs at the pool, those who are 21+ gather for adult fun, typically held off-site. Details will be provided. |
| 9:00pm – 11:30pm | Poker Night A fun round of Poker is hosted by Board Member Dave Pearce, and everyone is welcome. Details will be provided at the Family Reunion prior to it. |
FRIDAY, JULY 10, 2026
| 6:30am – 7:15am | Morning Yoga with Lori Start your day with a gentle, guided yoga session designed to refresh your body, calm your mind, and energize you for the conference ahead – no experience needed. Led by qualified yoga instructor and Batten Mom. |
| 7:15am – 5:00pm | Registration Please come to the Registration desk to claim you bag of goodies, including T-Shirts and nametags. |
| 7:15am – 7:45am | Prayer and Fellowship Join us as we gather for purposeful prayer and fellowship. |
| 7:30am – 8:30am | Breakfast on your own |
| 7:30am – 4:45pm | Day Camp Available Day Camp is open to Little Explorers who are 5 and under and those who are any age and affected with Batten disease. Activities, music, pet therapy, and movies are available to all! There’s even a quiet room for those who need a break. Pre-registration is required. |
| 7:30am – 8:00pm | Memorial |
| 7:50am – 8:00am | Welcome & Housekeeping Adults and SIBs of all ages should gather at the General Session for the welcome, housekeeping notes and dismissal of the SIBs together for their own General Session. |
| 8:00am – 8:30am | Inspirational Address Sharon King President, Taylor’s Tale Foundation |
| 8:30am – 12:15pm | SIBs Sessions – ALL SIBs of all ages will gather for dedicated programming that includes peer connection, age-appropriate activities, and supportive sessions focused on coping, connection, and the unique role of siblings. |
| 8:30am – 12:30pm |
8:30am-10:30am Research Plenary 10:00am-10:30am Coffee Break 10:30am – 12:30pm Research Plenary |
| 9:00am – 12:15pm | LGO Session – Life Goes On Bereavement Sessions Morning sessions include time for connection, reflection, and honoring our children through a grounding circle, memory stones, and lighting a candle in remembrance. Families will also share ways they continue to honor their child’s memory and legacy, including traditions, remembrance activities, and meaningful ways to keep their child’s light present in their lives. |
| 10:30am – 10:45am | BREAK |
| 12:15pm – 1:30pm | Lunch Available Meet the BDSRA Board |
| 1:30pm – 3:30pm | BREAKOUT PEER-TO-PEER SUPPORT (by NCL type / grandparents & caregivers together) For families who have children or adult loved ones currently living with NCL. This is a parent-to-parent led support session. |
| 1:30pm – 3:30pm | SIBs Programming (By Age) |
| 2:15pm – 8:00pm | LGO Outing
Escape Room & Aurelio’s Pizzeria
Transportation will be provided.
Pre-registration is required.
|
| 3:30pm – 3:45pm | BREAK |
| 3:30pm – 4:30pm | SIBs Breakouts: Research (ALL SIBs) Dr. Dave Pearce and Dr. Jonathan Cooper meet with the siblings in these interactive sessions, sharing their firsthand insights on the science and exciting research happening in Batten disease. |
| 3:45pm – 5:00pm |
The Lived Experience: Insights from Adults Living with Batten Disease • Maya Khurana, University of Rochester Medical Center (Introduction)
• Tammie Hill, CLN2 perspective
• Alexander Padalka, CLN3 perspective
• Maya and Xavier James (virtual) and Suzette James, CLN2 perspective
• Fireside chat with panelists
|
| 5:00pm – 6:00pm |
Meet the Scientists – Ask Me Anything • Jonathan Cooper, David Pearce & team |
| 4:30pm – 5:00pm | SIBs – BREAK Break to get ready for evening outing – SIBs shirt must be worn for this evening outing. Meet in the lobby at 5pm. |
| 5:00pm – 5:30pm | SIBs Group Pictures (ALL) Parents–Please ensure all SIBs have on their new SIB shirt and bring them to the designated picture location. All SIBs must wear their shirts for outings. |
| 5:00pm – 9:00pm | SIBs Outing Medieval Times Dinner & Tournament Transportation will be provided. Chaperones will be assigned for children 12 and under Pre-registration is required. |
| 6:30pm – 8:00pm | Dinner (On Your Own) |
| 8:00pm – 11:00pm |
Trivia/Game Night |
SATURDAY, July 11, 2026
| 6:30am – 7:15am | Morning Yoga with Lori Start your day with a gentle, guided yoga session to refresh and recharge. No experience needed, led by a certified instructor and Batten mom. |
| 7:30am – 4:00pm | Registration Please come to the Registration desk to claim you bag of goodies, including T-Shirts and nametags. |
| 7:30am – 8:00am | Prayer Join us as we gather for purposeful prayer and fellowship. |
| 7:30am – 8:30am | Breakfast (On Your Own) |
| 7:30am – 4:45pm | Day Camp Available Day Camp is open to Little Explorers who are 5 and under and those who are any age and affected with Batten disease. Activities, Music, Pet Therapy, and movies are available to all! There’s even a quiet room for those who need a break. Pre-registration is required. |
| 7:30am-5:00pm | Memorial |
| 8:30am – 10:30am | SIBs Programming |
| 8:30am – 10:15am |
8:30am – 8:40am Welcome & Housekeeping
8:40am – 9:00am Updates and Highlights from the Batten Disease Centers of Excellence (CoE) Program • Jennifer Vermilion, University of Rochester Medical Centeras 9:00am – 10:15am Ask-A-Doc Panel
This popular session offers attendees a chance to engage directly with our CoE clinicians to ask questions and gain practical insights into care, treatments, and management approaches.
• Heather Brown, Kennedy Kreiger Institute
• Aaron Hauptman, Kennedy Kreiger Institute
• Isabella Herman, Boys Town National Research Hospital
• Yael Shiloh-Malawski, University of North Carolina Chapel Hill
• David Rogers, Nationwide Children’s Hospital
|
| 8:30am – 12:00pm | LGO – Connection • Support • Remembrance
Peer-to-peer support, a shared candle-lighting to honor your child, and a morning session on living with grief over time, includes a one-hour talk led by a Batten dad.
|
| 10:15am – 10:30am | BREAK – Parents see kids off to SIBs outing Parents–Please ensure all SIBs are wearing their SIB shirt and bring them to the designated bus location. Everyone attending this outing must wear the SIB T-shirt. |
| 10:30am – 12:00pm |
Supportive Therapies in Optimal Multidisciplinary Management in Batten Disease
Supportive Therapies are central to multidisciplinary care, helping to manage symptoms, maintain function, and optimize quality of life for individuals and their families. This session will explore practical, coordinated approaches across physical therapy, vision support, communication, feeding and nutrition, psychosocial support, child life, and family-centered care throughout the disease journey. • Zachary Elkin, NYU Langone
• Sarah Kappers, Lurie Children’s Hospital
• Lisa Tilbrook, Thrive Health Group
• Amanda Wick, Maryville University of St. Louis
• Hailey Mangano, Kennedy Krieger Institute
• Anna Chassevent, Kennedy Krieger Institute
• Sophie DeBacco, Children’s National Hospital
|
| 10:30am – 1:45pm | SIBs – Outing
Bowling and Pizza
Pre-registration is required.
|
| 12:00pm – 1:00pm | Lunch |
| 12:00pm – 1:30pm | POSTER PLENARY – Science Fair Poster Session Explore the latest advances in Batten disease research through this interactive science fair-style poster session. Meet the researchers behind the science, learn about innovative projects underway across the United States, ask questions, and discover how today’s research is shaping tomorrow’s treatments and improving outcomes for individuals and families affected by Batten disease. |
| 1:15pm – 2:15pm | LGO Session – Music & Memory |
| 1:30pm – 3:15pm |
BREAKOUT PEER-TO-PEER SUPPORT
(by NCL type)
Parents come together to share experiences, offer support, and connect with others living the Batten journey. |
| 1:30pm – 3:15pm | FOR GRANDPARENTS: Standing Together: Supporting Your Child and Grandchild Through Batten Disease Through lived experience, bereaved parents offer guidance to grandparents on supporting families navigating Batten disease. The session highlights practical ways to provide care, presence, and connection along the journey. |
| 1:45pm – 3:00pm | SIBs Programing – ALL |
| 2:15pm – 3:00pm | LGO Session (open to everyone) Trifecta Dance Company- Love Still Moves |
| 3:00pm – 4:30pm | LGO session Paint & Sip |
| 3:00pm – 4:30pm | SIBs Swimming – Ages 6-12 |
| 3:00pm – 4:30pm | SIBs Programing – Age 13+ Peer-to-Peer Support |
| 3:30pm – 4:45pm | Ask-A-SIB Siblings share honest reflections about growing up in a Batten family, answering audience questions about love, challenges, and resilience. This session offers valuable insight for parents, extended family, and friends on how to communicate openly about Batten disease and support every child in the family. Even for families without non-affected siblings, it provides perspective on the sibling experience and the importance of honesty, connection, and inclusion. |
| 5:15pm – 5:45pm | Kids Assemble for Parade Preparation |
| 5:45pm – 6:05pm | Trifecta Dance Company Dance company presents a short performance featuring children and their siblings, followed by a full company performance. |
SUNDAY, July 12, 2026
| 8:00am – 9:30am | Breakfast (On Your Own) |
| 9:00am – 10:30am | Celebration of Life We gather to celebrate the lives of those we have lost to Batten disease. All loved ones who have passed since the last conference will be named and a candle lit for them. Conference Attendees who would like to have their loved ones remembered in addition are asked to submit the information needed to include those lost and will be invited to light a candle for them as well. |
Questions?
Contact Registration Support
P: 866-792-5399
(Monday – Friday 8:00 a.m. – 5:00 p.m. Eastern US Time)
BDSRA@sswmeetings.com
