Batten Disease Support & Research Association

Ask-An-Expert Webinar: Research in Review
2024-04-09 17:00 - 18:00 (America/New_York)
Ask-An-Expert returns on Tuesday, April 9 from 5:00-6:00 p.m. EDT for a Research in Review edition. Hosted by BDSRA Foundation Head of Research & Medical Affairs, Dr. Ineka Whiteman, this webinar will feature presentations from:

Paulo Falabella, MD, PhD, Vice President, Clinical Development & Operations, REGENXBIO: Preliminary Clinical Data on CLN2 Gene Therapy RGX-181 & RGX-381
Ewa Ziółkowska, PhD, Post Doctoral Researcher, Pediatric Storage Disorders Lab, Washington University in St. Louis: Gene Therapy Treats Neuromuscular Consequences in a CLN3 Mouse Model
Ineka Whiteman, PhD, Head of Research & Medical Affairs, BDSRA U.S. & Australia: Clinical Research Updates

IMPORTANT NOTE: Although webinars are typically recorded and posted to our YouTube channel afterward, today’s webinar WILL NOT be recorded. So if you’re able to, please register to attend the webinar.
Learn more and register by clicking here.

Moderator Support Training
2024-06-05 20:00 - 21:00 (America/New_York) | Zoom
On Wednesday, June 5 at 8 p.m. EDT, Dr. Joseph Vigil will lead virtual training via Zoom for anyone who wants to facilitate discussions in the breakout groups at the Annual Family Conference in July. The breakout groups at the conference will include bereaved fathers, bereaved mothers, grandparents, and actively caring mothers and fathers by CLN type.
Please complete the form by clicking here and email support@bdsrafoundation.org for any questions and/or issues. Once you register, you will receive the Zoom link to join the training via the success page and a confirmation email.

International Batten Disease Awareness Day
2024-06-09
About this event: Join us as we celebrate Batten families around the world and raise awareness and funds! The BDSRA Foundation is hosting the 2024 International Batten Disease Awareness Day Virtual 5K on Sunday, June 9th, 2024. You don’t have to participate in the virtual 5K to advocate for Batten disease. This year, we’re providing a variety of activities for you to raise awareness and funds for Batten disease and BDSRA, including fundraising, sending letters to your congressional representatives, and more.
Click here for more information.

First-Time Conference Attendee Orientation
2024-06-18 18:30 - 19:30 (America/New_York) | Zoom
BDSRA will hold a First-Time Conference Attendee Orientation on Tuesday, June 18, at 6:30 p.m. EDT. This virtual event will be a casual forum for those attending the Annual Family Conference for the first time this July. Attendees will receive more information about the conference during this event and can ask questions.
Please click here to register, and email support@bdsrafoundation.org for any questions and/or issues. Once you register, you will receive the Zoom link to join the session via the success page and a confirmation email.

SIBs Warm-Up
2024-06-19 18:30 - 19:30 (America/New_York) | Zoom
Before you reunite with your fellow SIBs in person at July’s Annual Family Conference in St. Louis, catch up with them and meet new SIBs beforehand! Whether you’re new to the SIBs program or a longtime member, we encourage you to attend the SIBs Warm-Up on Wednesday, June 19, at 6:30 p.m. EDT.
Please click here to register and email support@bdsrafoundation.org for any questions and/or issues. Once you register, you will receive the Zoom link to join the Warm-Up via the success page and a confirmation email.

Annual Family Conference in St. Louis
2024-07-12 - 2024-07-14
Click here to visit the main conference page on our website, which inckudes information on registration, hotel & travel, the conference agenda, and more!

2nd Annual Dog Days of Summer Virtual Party
2024-08-11 16:00 - 17:00 (America/New_York) | Zoom
The summer days are hot, but hanging out with your BDSRA pack is so cool! Join us for a howling good time during the 2nd Annual Dog Days of Summer Virtual Party!
This virtual party will take place via Zoom on Sunday, August 11, at 4 PM EDT. This party is an opportunity for Batten SIBs and parents to celebrate summer alongside their affected loved one(s) with a story and craft activity. If you have any dogs, they can join you too! FREE party kits are available for families to order during registration until 11:59 PM EDT on Sunday, July 28, while supplies last. Party kits are reserved for U.S. and Canadian families only. You may still register to attend the party after that date.
A Zoom link will be sent to the email address you use to register, along with instructions on how to join in the fun. Families are welcome to request a kit for each child who will be participating!
Let’s get ready for a party you won’t fur-get!

Boo Bash 2024
2024-10-13 16:00 - 17:00 (America/New_York) | Zoom
CLICK HERE TO REGISTER
Who’s ready for a scary good time?
Grab your costumes and join us for a frightfully FUN time as BDSRA hosts its Annual Boo Bash for Batten families on Sunday, October 13, at 4 PM EDT via Zoom. This virtual party allows parents and SIBs to gather with their loved one(s) with Batten and enjoy a Halloween party with fellow Batten families and the BDSRA staff!
The deadline to order party kits has passed, but you may still register to attend the party and join the fun.
A Zoom link will be sent to the email address you use to register, along with instructions to join in the SPOOK-tacular fun. Families are welcome to request a kit for each child participating!

2024 Annual Appeal
2024-11-04 - 2025-01-01
Beginning on November 4, the BDSRA Foundation will open its Annual Appeal Giving campaign. Stay tuned for information on how you can help Batten families and ways to give.
Watch our Facebook and Instagram for updates, and click here to sign up for our email list.

Fam Funds Informational Zoom Meeting
2025-01-28 12:30 - 13:30 (America/New_York) | Zoom
FAM FUNDS IS BACK!

Batten families now have the opportunity to help raise funds for the BDSRA Foundation and awareness for Batten disease through their own fundraisers! Learn more about Fam Funds by attending this information session.
Click here to register.

Board of Directors Quarterly Meeting
2025-02-01 08:30 - 17:00 (America/Chicago) | Zoom
BDSRA’s Board of Directors will have its quarterly meeting in person on Saturday, February 1, 2025, from 8:30 AM to 5 PM CST in Chicago.

Valentine's Day Party
2025-02-11 18:30 - 19:30 (America/New_York) | Zoom
Love is in the air, and so is fun! The BDSRA Foundation is excited to invite Batten families to a Valentine’s Day party via Zoom on Tuesday, February 11, at 6:30 PM EST. It’s a special chance for parents, siblings, and their loved one(s) with Batten to come together for a night of joy, creativity, and community.
💐 What’s in store?

A story to enjoy together
A fun craft activity to spark creativity (don’t worry, we’ve got the supplies covered!)

Party hits have SOLD OUT. You may still register and join the party if you didn’t reserve a party kit!
Once you’ve registered, we’ll email you the Zoom link to join the fun. So grab your family, and let’s make this virtual party one to remember! 💌
Click here to register.

Rare Disease Week on Capitol Hill
2025-02-24 - 2025-02-26
UPDATE: FDA-NIH Rare Disease Day has been postponed.
Click here for Rare Disease Week on Capitol Hill information.

SIBs Mid-Season Social
2025-03-01 13:00 - 14:00 (America/New_York) | Zoom
The SIBs Mid-Season Social on Saturday, March 1, 2025, is open to BATTEN SIBLINGS ONLY. Batten siblings of all ages are welcome, including those who haven’t participated in the SIBs program before. This event is an opportunity for SIBs to reconnect with fellow Batten SIBs and for those new to the program to introduce themselves. A Zoom link to join the event will be available in your confirmation email after you register.
Click here for more registration details.

DEADLINE: International Batten Disease Awareness Day T-Shirt Design Contest
2025-03-30
T-Shirt Contest: IT’S BACK AGAIN! For the third straight year, we are holding another T-shirt contest to determine the design of this year’s International Batten Disease Awareness Day T-shirt! Previous winners include:
2024: Kennedy Reed
2023: Kris Bonagofsky
DEADLINE: Design Submissions will be accepted through 11:59 p.m. EDT on Sunday, March 30th. Submissions are limited to one per person.

BDSRA will narrow submissions down to three finalists in early April. Once there are three finalists, the community will vote on the winner, which will be unveiled later in April.
Please find the design guidelines, instructions, and deadline for this year’s contest by clicking here.

2025 International Batten Disease Awareness Day & Virtual 5K
2025-06-09
CLICK BELOW FOR ALL INFORMATION ON INTERNATIONAL BATTEN DISEASE AWARENESS DAY AND THE VIRTUAL 5K!
CLICK HERE.

Newly Diagnosed & First-Time Conference Attendee Orientation
2025-06-17 19:30 - 20:30 (America/New_York) | Zoom
BDSRA will hold a Newly Diagnosed & First-Time Conference Attendee Orientation on Tuesday, June 17, at 7:30 PM EDT.
This virtual event will be a casual forum for conversation with families who have recently received a Batten disease diagnosis as well as those who are interested in attending the Annual Family Conference this July. Attendees will receive more information about BDSRA, the disease, helpful resources, the conference, and more during this event.
Click here to register for this virtual event.

Coffee Chat
2025-06-27 12:00 - 13:00 (America/New_York) | Zoom
Hosted by Batten parent Heather Dainiak, these chats are a safe space for parents and caregivers of all CLN types—no pressure, no obligation—just understanding, connection, and a chance to breathe.
June Theme: When Summer Feels Overwhelming Navigating the End of the School Year
The end of the school year can bring mixed emotions—graduations, moving-up ceremonies, and the reality of watching other children grow while yours faces a different path. As routines shift and summer begins, this chat is a space to discuss the stress, sadness, and uncertainty that this season can bring.
Dates (choose one session):

Tuesday, June 24 at 8 PM EDT
Friday, June 27 at 12 PM EDT

If you’ve already completed the registration form, you don’t need to again. You will receive reminder emails for upcoming chats along with the Zoom link. That Zoom link will work for future Coffee Chats.
Click here to register.

2025 BDSRA Annual Family Conference
2025-07-11 - 2025-07-13
CLICK BELOW FOR ALL INFORMATION ON THE 2025 BDSRA ANNUAL FAMILY CONFERENCE IN LINCOLN, NEBRASKA!
CLICK HERE.

Board of Directors Application Deadline
2025-08-31
Our Board of Directors makes a difference for the Batten community. Are you ready to make an impact?
Apply to join the Board of Directors by August 31! Visit the application to see the full description and qualifications.
CLICK HERE TO VIEW THE APPLICATION.

Ask-An-Expert: Understanding ABLE Saving Plans
2025-10-15 18:00 - 19:00 (America/New_York) | Zoom
ASK-AN-EXPERT RETURNS!
Mark your calendars for Wednesday, October 15, at 6 PM EDT, for the next virtual Ask-An-Expert, featuring Stacy Pfeifer, Director of Enable Savings Plan. Stacy has been with the Nebraska State Treasurer’s Office for 13 years and the Director of Enable for 3 ½ years. Stacy educates individuals about Enable accounts through presentations and resource fairs.
Click here to learn more about Stacy and register.

Grief Chat
2025-10-19 19:00 - 20:00 (America/New_York) | Zoom
BDSRA, as part of its Life Goes On program for bereaved parents, and its facilitators are committed to providing the Batten community with regular opportunities to come together and share.
These virtual grief chats take place every other month at 7 PM EDT. If you haven’t registered before, you only need to complete the registration form once, and you will receive a Zoom link that will work for all future Grief Chats and multiple email reminders before each chat.
You are not required to sign up for or attend each scheduled chat.
Click here to register.
These Grief Chats provide an opportunity for bereaved Batten parents to gather and support one another, regardless of where they are on their grief journey.

NCL 2025 in Australia
2025-10-28 - 2025-11-01
On behalf of the NCL2025 Organizing Committee, BDSRA Australia is thrilled to be hosting the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) in the stunning surrounds of the Sunshine Coast, Queensland, Australia. As the premier conference on Batten disease, the bi-annual NCL Congress brings together world-leading researchers, healthcare providers, industry partners, innovators and patient advocacy leaders from around the globe.
BDSRA Australia looks forward to welcoming you to the Sunshine Coast in October 2025 for what promises to be a truly memorable event.

Stephanie Hughes
Chair
NCL 2025 International Congress

Ineka Whiteman
Chair
NCL 2025 International Congress &
BDSRA Australia Family Conference 2025

Abstract Submissions are now open for the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL).
Submit your abstract to play an important role in NCL 2025!

REGISTER HERE

Abstract Submissions are now open for the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL).
Submit your abstract to play an important role in NCL 2025!

SUBMIT YOUR ABSTRACT HERE

NCL 2025 is has secured discounted rates for the Congress and bookings can be made via Groups 360, which is external to the registration system. This booking process will provide delegates with greater flexibility to add extra nights, breakfast offerings as well as including any hotel loyalty programs.
BOOKINGS WILL CLOSE ON WEDNESDAY, JULY 30, 2025

VIEW THE INSTRUCTIONS VIA THE WEBSITE

There is a range of sponsorship and exhibition opportunities available at NCL 2025. To receive a copy of the 2025 Sponsorship Prospectus, or for any sponsorship enquiries, please contact:
Travis Clarke travis.c@asnevents.net.au

Board of Directors Town Hall (Eastern Time Slot)
2025-11-09 19:00 - 20:00 (America/New_York) | Zoom
Virtual Town Halls with the BDSRA Foundation Board of Directors will be held quarterly. The dates for these Town Halls are:

Sunday, November 9, 2025
Sunday, February 8, 2026
Sunday, May 10, 2026
Sunday, August 9, 2026

Each of these sessions will have two time slots; please choose one of those time slots to attend per session. Those time slots are 7 PM EST and 7 PM PST.
Click here to learn more.

Board of Directors Town Hall (Pacific Time Slot)
2025-11-09 19:00 - 20:00 (America/Los_Angeles) | Zoom

Coffee Chat
2025-11-14 12:00 - 13:00 (America/New_York) | Zoom
Hosted by Batten parent Heather Dainiak, these chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad—no pressure, no obligation—just understanding, connection, and a chance to breathe.
NOTE: You only have to complete the registration form ONCE, and you will receive the Zoom link for all future Coffee Chats. The Zoom link will remain the same for all chats. You will also receive email reminders for each upcoming Coffee Chat.
Click here to register.

Ask-An-Expert: NCL Congress and BDSRA Australia Conference Updates
2025-11-18 19:00 - 20:00 (America/New_York) | Zoom
Let’s dive into some research and clinical updates!
After attending the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) and BDSRA Australia’s Family Conference, BDSRA Head of Research & Medical Affairs, Ineka Whiteman, PhD, and Jonathan Cooper, PhD, of Washington University in St. Louis, will recap the events, share updates, and answer your questions.
Click here to learn more and register.
