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! Pre-Registration is required. (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 – 11:00pm | 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. |
| 8:15am – 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 of 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) |
| 9:00am – 12:00pm |
A Deep Dive into Batten Disease: From Bench to Bedside I. Research Overview and ‘Rapid Fire Abstracts’ 15 min break 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 – 2:45pm |
BREAKOUT SESSIONS: How to Develop a Life Plan – Kacy Seitz |
| 1:30pm – 4:30pm | Life Goes On – 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 |
| 3:00pm – 4:00pm | Knowing and Finding Good Days as You Parent Your Child Explore the holistic supports available to individuals with Batten disease and their families, including the role of clinical care teams, the Courageous Parents Network, and practical tools like NeuroJourney. Learn how to access resources that make a meaningful difference at every stage. |
| 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+) |
| 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. |
| 4:05pm – 5:00pm | 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. |
| 4:05pm – 5:00pm | Case Management 101 |
| 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 – 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. |
| 6:15pm – 8:00pm | Dinner (On Your Own) |
| 8:00pm – 11:00pm | Triva 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 |
|
8:30am – 10:15am |
Welcome & Housekeeping Ask-A-Doc Panel |
| 8:30am – 10:00am |
SIBs Breakouts |
|
8:45am – 10:45pm |
Life Goes On – 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: Anticipatory Grief |
| 11:00am – 12:00pm | Life Goes On – Bereavement Session |
|
12:00pm – 1:30pm |
Lunch (Pre-purchase is required) |
|
12:00pm – 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: Ask-Me-Anything: Scientist Panel Beyond Words: The Power of Music Therapy in Batten Disease Care |
|
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: Finding Joy: Celebrating your Batten Child’s Memory |
| 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 complimentary, 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 |
Questions?
Contact Registration Support
P: 866-792-5399
(Monday – Friday 8:00 a.m. – 5:00 p.m. Eastern US Time)
BDSRA@sswmeetings.com
