Agenda

The agenda is subject to change.

All times are listed in Central Daylight Time (CDT).

Pre-registration is required.

THURSDAY, JULY 10, 2025

9:00am – 5:00pm
 Board Meeting
Closed Meeting (BDSRA Board Members Only)
3:00pm – 7:00pm Registration Open
Please come to the Registration Desk in the Grand Atrium to claim your conference materials including T-Shirts, nametags and meal tickets.
3:00pm – 6:00pm Exhibitors Open
4:00pm – 6:00pm
 Lincoln Children Museum
FREE Event!
(Sponsored by Ethan’s Reason Foundation)
4:00pm – 5:00pm (Public)
5:00pm – 6:00pm (Private Family Session)
6:00pm – 7:00pm
 New Family Orientation (First Time Attendees)
Join fellow first-time conference attendees for a special opportunity to connect with long-time participants. They’re available to answer your questions, offer support, and help you feel at home. Beverages will be served.
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.
6:00pm – 7:00pm Donors’ Reception (By Invitation)
Sponsors are invited to join this reception of gratitude for your support of BDSRA and the annual conference. Refreshments and drinks will be served.
6:30pm – 9:00pm SIBs – Pool Party and Dinner
SIBs of all ages are invited to swim in the hotel pool, enjoy games, and have dinner together.
7:00pm – 9:00pm Welcome Reception – Family Reunion
Everyone is invited to the Family Reunion! Reconnect with old friends, meet familiar faces from Facebook, or make new connections while enjoying drinks and snacks. The only formal part of the evening will be a brief welcome from BDSRA.
9:00pm – 11:30pm Poker Night
Join us for a fun and friendly round of poker, hosted by Board Member Dave Pearce—everyone is welcome! More details will be shared during the Family Reunion.
9:00pm – Until SIBs (21+) Offsite
After wrapping up the pool party with the younger SIBs, those 21 and older are invited to continue the fun with an adults-only gathering, usually held off-site. Details will be shared onsite.

 

FRIDAY, JULY 11, 2025

6:30am – 7:15am Morning Yoga with Lori
Start your day with a gentle, guided yoga session to refresh your body, calm your mind, and energize you for the day ahead—no experience necessary. Led by qualified yoga instructor and Batten mom, Lori Brown.
7:30am – 5:00pm Registration
If you’re unable to register and pick up your conference materials on Thursday, please make sure to do so on Friday in the Grand Atrium.
7:30am – 5:00pm Exhibitors Open
7:30am – 8:30am Breakfast
(Pre-purchase is required)
7:30am – 8:00am Prayer and Fellowship
Join us for a meaningful time of prayer and fellowship, led by Batten dads Aaron Keller and Sam Larson.
7:30am – 5:00pm Day Camp Available
Day Camp is open to Little Explorers ages 5 and under, as well as individuals of any age affected by Batten disease. Everyone can enjoy activities, music, pet therapy, and movies—plus, there’s a quiet room available for those who need a break.
8:00am – 7:00pm Gait Testing
8:15am – 8:30am Welcome & Housekeeping
Adults and SIBs of all ages should gather at the General Session for the welcome, housekeeping notes and dismissal of the SIBs for their own general session.
8:30am – 9:00am Keynote Session: Leadership, Resilience & Community
Longtime football coach and motivational speaker Bill Busch is known for his strong leadership on the field and heartfelt compassion off it. With deep Nebraska roots and a gift for bringing people together, he’s a truly beloved figure.
8:30am – 9:45am SIBs General Session, Fun & Games (All Ages)
8:30am – 9:00pm Memorial Room Open
9:00am – 12:00pm A Deep Dive into Batten Disease: From Bench to Bedside
A comprehensive session exploring the latest in Batten disease research, from foundational science to currently active clinical trials.

I. Research Overview and ‘Rapid Fire Abstracts’
Scientists and clinicians will present their latest research and insights from basic, preclinical and clinical research fields. Live, in-person presentations, followed by Q&A.

15 min break

II. Updates from the Clinical Trial Pipeline

Hear the latest in currently active clinical trials for treatment of Batten disease.

III. Open Q&A Panel with biotech partners and clinical program leads.
10:00am – 12:30pm SIBs Breakout Session (Ages 6-12)
This session is all about fun! Designed especially for siblings ages 6 to 12, this is a space for laughter, playing games, and building friendships. Kids will have an opportunity to connect with others who understand their journey—all in a relaxed, playful environment. No heavy talk, just good times!
10:00am – 12:30pm SIBs Breakout Session (Ages 13+)
A welcoming, closed-door session led by fellow SIBs, designed to offer siblings a safe and supportive space to connect, share, and be heard. While participation is encouraged, speaking is never required—just being present is enough. This session prioritizes privacy, understanding, and mutual respect.
10:30am – 10:45am BREAK
10:45am – 12:00pm Estate Planning
Kim Zellmer, Past Board Chair and Batten mom, will cover the essentials of estate planning for estates of all sizes—including avoiding probate, the differences between wills and trusts, guardianship, health care directives and durable powers of attorney, and special needs planning to protect Medicaid benefits. She will also discuss planned giving and how to include BDSRA in your legacy.
12:00pm – 1:30pm Lunch Available
(Pre-purchase is required)
1:30pm – 2:30pm Finding Good Days: A Quality of Life Framework for Families on the Batten Journey
Explore the holistic supports available to individuals with Batten disease and their families, including the role of multidisciplinary clinical care teams, decision-making frameworks, and practical support resources, including the Courageous Parents Network. Learn how to access supports that make a meaningful difference at every stage.
1:30pm – 4:30pm LGO – Museum of American Speed
(Pre-registration is Required)
Voted #1 by USA Today’s Readers’ Choice Award: Best Attraction for Car Lovers.
A guided tour will be provided in this 150,000 sq. ft. museum which was formed to present a continuous chronology of automotive racing engines and speed equipment development to preserve, interpret, and display items significant in racing and automotive history. Transportation to the museum will be available.
1:30pm – 2:30pm SIBs Breakouts: Research
Dr. Dave Pearce and Dr. Jon Cooper will meet with the siblings in these interactive sessions, sharing their firsthand insights on the science and exciting research happening in Batten disease.
2:00pm – 3:30pm Pet Therapy in Day Camp
Volunteers Provided by Uplifted Paws
Join us for a heartwarming session where specially trained service dogs visit to offer comfort and companionship. Children are invited to meet, pet, and interact with these gentle dogs, providing a soothing and joyful experience for all.
2:30pm – 3:00pm BREAK
2:45pm – 3:45pm SIBs Breakout Sessions
2:45pm – 3:45pm SIBs Bereavement Session
All the Feels: Understanding and Expressing Emotions in Grief
This creative and connection-focused session is designed for bereaved siblings. Through art, discussion, and storytelling, participants will explore the full range of emotions they’ve experienced in grief. Together, we’ll make space for sadness, joy, anger, and everything in between, while honoring the continuing bond each sibling holds.
2:45pm – 3:45pm BREAKOUT SESSIONS:
A Gift for the Future: Understanding Tissue Donation
Families are invited to join a compassionate conversation about the importance and practical aspects of brain and tissue donation to help advance research and improve care for future generations.

Case Management 101
Participants will gain a clear understanding of the core principles, roles, and responsibilities of case managers working with individuals with developmental, intellectual, or physical disabilities. Topics will include needs assessment, service planning, coordination of care, advocacy, documentation, and collaboration with families and service providers.
3:50pm – 4:45pm SIBs – Jam Session (Ages 6-12)
Join talented musician, Amanda Wick, in an interactive session where siblings of all ages can relax, connect, and enjoy music tailored just for them.
3:50pm – 4:45pm SIBs Breakout Session (13+)
3:50pm – 5:00pm “The Gene Panel”: A Discussion of Gene-Related Topics in Batten Disease
Our Expert Panel will discuss the basics of genes and genetic test reports, carrier screening, the role of genetic counsellors, and the latest in newborn screening. Concludes with open Q&A.
4:00pm – 5:00pm How to Develop a Life Plan – Kacy Seitz
This workshop provides comprehensive guidance on planning for a child who may require long-term support, covering legal, financial, and benefit considerations beyond traditional financial planning, including special needs trusts, funding options, and accessing federal benefits.
4:00pm – 5:15pm Support Groups: Grandparents & Caregivers
This session provides a welcoming space where grandparents and caregivers can connect, share experiences, and find support. It offers an opportunity to engage with others who understand the unique challenges and joys of caregiving while gaining valuable resources, encouragement, and community.
4:45pm – 5:15pm SIBs (All)
Use this time to get ready for this evening’s outing. SIBs T-shirts and name tags must be worn for this event. Meet in the Lobby at 5:00pm. SIBs under 12 must be chaperoned by volunteer or parent during this time.
5:15pm – 5:30pm SIBs – Group Pictures (ALL)
Parents-Please bring the SIBs to the designated picture location wearing their new SIB T-shirt. Everyone who attends this event is required to wear a SIB T-shirt.
5:30pm – 6:15pm Ask the BDSRA Board
5:30pm – 9:00pm SIBs Outing*
Prehistoric Putt Indoor Miniature Golf & Dinner
*SIBs under 12 must be chaperoned by a volunteer during this time. Parents are not permitted.
6:00pm – 7:30pm Reception for CLN2 Families (Sponsored by BioMarin)
Yankee Hill 3 (2nd Floor, Office Side)
6:15pm – 8:00pm Dinner (On Your Own)
8:00pm – 11:00pm Trivia Night
Gather a team and join us for Trivia Night. You don’t have to know it all to have fun!

SATURDAY, JULY 12, 2025

6:30am – 7:15am

 Yoga
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, Lori Brown.

7:30am – 4:00pm

 Registration
The registration desk is open for questions and those who need to pick up their conference materials.

7:30am – 8:30am

 Breakfast Available
(Pre-purchase is required)

7:30am – 8:00am

 Prayer
Join us for a meaningful time of prayer and fellowship, led by Batten dads Aaron Keller and Sam Larson.

7:30am – 5:00pm

 Day Camp Available
Day Camp is open to Little Explorers ages 5 and under, as well as individuals of any age affected by Batten disease. Everyone can enjoy activities, music, pet therapy, and movies—plus, there’s a quiet room available for those who need a break.

8:00am – 4:00pm

 Exhibitors Open
8:00am – 5:00pm Gait Testing

8:00am – 6:00pm

 Memorial Room Open

8:30am – 10:15am

Welcome & Housekeeping

Ask-A-Doc Panel
This popular session offers attendees a chance to engage directly with our Center of Excellence clinicians to ask questions and gain practical insights into care, treatments, and management approaches.
8:30am – 10:00am
 SIBs Breakouts

8:45am – 10:45am

 LGO – Sip & Create
(Pre-registration is Required)
Remembering with Love: Photo Keepsake Workshop ($10)
Create a custom photo necklace or keychain in honor of your child. This session offers a quiet space for connection, reflection, and remembrance.

10:00am – 10:15am

 BREAK – Parents see kids off to SIBs outing
Parents–Please bring the SIBs to the designated bus location wearing their SIB T-shirt. All SIBs must wear the SIB T-shirt for the outing.

10:15am – 2:45pm

 SIBs Outing
Urban Air Trampoline & Adventure Park & Lunch

10:30am – 11:45am

BREAKOUT SESSIONS:
Behavior, Cognition & Learning
This session will explore some of the common behavioral and cognitive changes associated with Batten disease and discuss practical strategies for their management, including in the home and school settings.

Anticipatory Grief
Anticipatory grief is the emotional response experienced before an impending loss, often occurring when a loved one is facing a terminal illness or progressive decline. This session explores the unique nature of anticipatory grief and how it differs from conventional bereavement. Participants will gain insight into the psychological, emotional, and physical impacts of anticipatory grief on individuals, families, and caregivers.
11:00am – 12:00pm LGO – The Ongoing Bond: The Full Spectrum of Grief, Identity, and Love

12:00pm – 1:30pm

 Lunch
(Pre-purchase is required)

12:30pm – 5:00pm

 Centers of Excellence & Batten Disease Clinical Research Consortium (CoE/BDCRC) Working Group
Closed Meeting (CoE and BDCRC Members Only)

1:30pm – 2:45pm

BREAKOUT SESSIONS:
Managing Caregiver Stress/Burnout
(Open to All Adults)
Caring for others—whether professionally or personally—can be deeply rewarding, but it often comes with emotional, physical, and mental challenges that can lead to stress and burnout. This session explores the signs, symptoms, and stages of caregiver stress and burnout, with a focus on both professional caregivers and family members in caregiving roles.

Participants will learn to identify early warning signs of burnout, understand the impact of chronic stress on health and well-being, and develop effective coping strategies.

Ask-Me-Anything: Scientist Panel
Join our friendly panel of researchers for a fun and interactive session. Have a go at pipetting, take a peek down a microscope, and bring your burning questions—we’re ready for them all!

Beyond Words: The Power of Music Therapy in Batten Disease Care
This session will explore how music therapy supports emotional, cognitive, and physical well-being for children affected by Batten disease. The presentation highlights case studies, therapeutic techniques, recent research, and the profound impact of music in enhancing quality of life and communication beyond traditional treatments.
3:00pm – 4:00pm CLN Support Groups: Moms/Dads
Moderated Support Groups provide dedicated time for parents to connect and talk with others whose children are affected by the same or similar CLN type. These are intentionally split by moms, dads, bereaved moms and dads, and support-people.
3:00pm – 4:30pm SIBs Swimming (Ages 6-12)

3:15pm – 5:00pm

 Children’s Music Therapy
Amanda Wick will provide musical entertainment for the Batten-affected attendees and children five and under.

4:15pm – 5:00pm

BREAKOUT SESSIONS:
Ask-A-SIB
In this open and thoughtful session, teenagers and young adults who have siblings with Batten disease will answer questions from parents, caregivers, and other adults. Through honest conversation, they’ll share their personal experiences, challenges, and insights—offering a deeper understanding of what it’s like to grow up as a sibling in a Batten family.

Finding Joy: Celebrating your Batten Child’s Memory
This session is open to families at all stages of the Batten journey.
5:15pm – 6:00pm Kids Assemble for Parade Preparation
6:00pm – 11:00pm Banquet
This is our time to let loose and celebrate being together! The evening begins with a parade of our loved ones with Batten disease. Dinner is complementary, thanks to Mary Payton’s Miracle Foundation, so everyone can join in the fun. A brief program will take place and then the dancing begins. Be sure to bring your cash for the SIBs Dollar Dance.

 

SUNDAY, JULY 13, 2025

8:00am – 9:30am Breakfast Available
(Pre-purchase is required)
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 have a candle lit for them. Conference Attendees who would like to have their loved ones remembered are asked to submit the information requested during registration. Families will be invited to light a candle for their loved ones who were lost to Batten disease.
5:30pm – 7:30pm Lincoln Children’s Zoo
FREE Private Event
(Sponsored by Sandhills Global)

Questions?
Contact Registration Support
P: 866-792-5399
(Monday – Friday 8:00 a.m. – 5:00 p.m. Eastern US Time)
BDSRA@sswmeetings.com