REGENXBIO Webinar
2023-11-30 18:00 - 19:00 (America/New_York) | Zoom
Have questions on the latest news concerning REGENXBIO and its halted gene therapy programs for CLN2 Batten disease? Join us for a webinar on Thursday, November 30, at 6 p.m. EST.
This webinar will be hosted by BDSRA Head of Research & Medical Affairs Dr. Ineka Whiteman, who’ll be joined by BDSRA board members Dr. David Pearce and Dr. Fernanda Leal-Pardinas. Dr. Whiteman will provide the latest news on REGENXBIO’s Batten disease programs, followed by a Q&A.
Those who wish to attend MUST register. Register before the webinar’s start time on Nov. 30.
Click here to register.

Board of Directors Meeting
2023-12-03 | Zoom
The BDSRA Foundation Board of Directors will meet virtually on Sunday, December 3, 2023, at 4 p.m. EST. The meeting agenda is below.

2023 Research in Review Webinar
2023-12-13 18:00 - 19:00 (America/New_York) | Zoom
Mark your calendars for Wednesday, Dec. 13 at 6 p.m. EST (Thursday, Dec. 14, 2023, at 10 AM AEDT, Sydney/Melbourne) for a 2023 Research in Review webinar hosted by Dr. Ineka Whiteman, joined by Dr. David Pearce, Dr. Jonathan Cooper, Dr. Kourtney Santucci, and Dr. Tony Cook.
Click here to register for the event.

Holiday Grief Chat
2023-12-17 19:00 - 20:00 (America/New_York)
Join host and bereaved Batten mother Peggy DiCapua for BDSRA’s Holiday Grief Chat on Sunday, December 17, at 7:00 PM EST.
The holidays can be a challenging time in the face of the loss of a loved one. This is an opportunity for loved ones to gather, share, and support one another. We understand that each stage of this journey is different, and we are here for you.
BDSRA extends its love and support to those bereaved family members this holiday season.
Click here to register.

Martin Luther King Jr. Day (Office Closed)
2024-01-15

CLN7 Batten Disease Research Update
2024-01-18 15:00 - 16:00 (America/New_York) | Zoom
Elpida Therapeutics will host an open virtual meeting via Zoom on Thursday, January 18, from 3-4 p.m. EST, to provide an update on the ongoing gene therapy trial for treating CLN7 Batten disease, which has been led by the University of Texas Southwestern Medical Center.
They will discuss their plans to expand the treatment to more patients in the future, and how our patient community can help move this program forward. Please note that this meeting is primarily for families affected by CLN7 disease but is open to all Batten families, researchers, clinicians, patient advocacy groups, etc. who wish to attend.
Join the Zoom meeting by clicking the link below.
Link: https://us02web.zoom.us/j/9890666291?omn=87196549060
Meeting ID: 989 066 6291

SIBs Mid-Season Social
2024-01-20 16:00 - 17:00 (America/New_York)
CALLING ALL BATTEN SIBS!
The time has come to re-connect with your fellow Batten SIBs and meet new ones at the SIBs Mid-Season Social! This event will take place on Saturday, January 20, at 4 p.m. EST on Zoom. Register to attend the event by clicking the link below.
For any questions about the event, please email SIBs leader Jeni Montavon at jnmntvn@gmail.com.
If you have issues and/or questions related to registration for the event, please email support@bdsrafoundation.org.
CLICK HERE TO REGISTER

Valentine's Day Party
2024-02-14 18:30 - 19:30 (America/New_York)
LOVE IS IN THE AIR! It’s time to mark your calendars for the first BDSRA holiday party of 2024!
BDSRA will be hosting a virtual Valentine’s Day party on Wednesday, February 14, at 6:30 p.m. EST. This is a time for Batten SIBs, parents, and affected family members to gather for a fun evening celebrating Valentine’s Day with a party kit that includes a story and craft!
The deadline to order party kits has passed, but you may still attend the party by registering. You will receive the Zoom link to join the party after registering.
Click here to register!

Rare Disease Week on Capitol Hill
2024-02-25 - 2024-02-28
For complete information on this event, including registration, please visit the EveryLife Foundation for Rare Diseases website.
“Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come.
Hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. No matter one’s connection to rare disease or their advocacy experience level, all are welcome.”

Rare Disease Day at NIH
2024-02-29 09:00 - 17:00 (America/New_York)
For complete information on this event, including registration, click here.
“Rare Disease Day at NIH will be held at NIH Main Campus (Natcher Conference Center) on Thursday, Feb. 29, 2024, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda will feature panel discussions, rare diseases stories, in-person exhibitors and scientific posters, and an art exhibition. The event is free and open to the public.”

Rare Disease Day at FDA
2024-03-01 09:00 - 16:30 (America/New_York)
For complete information on this event, including registration, click here.
“FDA will host Rare Disease Day, a virtual public meeting, on March 1, 2024 in global observance of Rare Disease Week. This year’s Rare Disease Day is dedicated to patients and health care professionals. Panels will discuss:

The legal framework for approving studies and medical products at FDA
What FDA does during review processes to approve medical products
Decentralized clinical trials and digital health technologies
Where to find important information and documents related to clinical trials
Information that can be obtained from medical product labels
Legal and ethical requirements for consent forms in clinical trials
FDA initiatives to advance medical product development for rare diseases
Ways for patients to engage with FDA.”

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.
