Batten Disease Support & Research Association

Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief
2022-08-17 18:00 - 19:00 UTC
Join us for Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief on Wednesday, August 17th at 6 p.m. EST with Batten experts. This session will recap the research presentations at this year’s Family Conference and have a live Q&A.
Register by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22383

BDSRA Quarterly Grief Chat
2022-09-08 19:00 - 20:00 UTC
The BDSRA Foundation will host its next Quarterly Grief Chat on Thursday, September 8th at 7:00 p.m. EST. This is an opportunity for loved ones to gather, share and support one another. BDSRA understands that each stage of this journey is different, and we are here for you.
Register to attend by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22540
Join the event with the zoom link that will be sent via email following registration.

Bike For Batten 2022 (Nampa, ID)
2022-09-17 09:00 - 12:00 (America/Denver)
Registration for the 2nd Annual Bike for Batten fundraiser is open!
This fundraiser, organized by Bekah Murphy, a CLN2 Batten aunt, features bike rides in Nampa, Idaho on Saturday, September 17th and Colville, Washington on Saturday, September 24th.
Click here to read Bekah’s story and register!

Advocacy Committee Meeting
2022-09-18 19:00 - 20:00 UTC
Our Advocacy Committee invites you to discuss local and federal advocacy efforts, Newborn Screening, Rare Disease Week, how to share your story, and more!
Virtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET. The first meeting will be held on Sunday, September 18th!
Please email info@bdsrafoundation.org to get started!

Bike For Batten 2022 (Colville, WA)
2022-09-24 09:00 - 11:30 (America/Los_Angeles)

Peer Support Group Leader Training
2022-10-04 19:00 - 20:00 UTC
Join us for BDSRA Peer Support Group Leader Training on Tuesday, October 4th at 7 p.m. EST. This session is open to anyone interested in helping others share their stories, supporting them during their Batten journeys, and leading support groups for the Batten community.
Click the link below to register and join the session on October 4th with the zoom link sent after registration.
Click here to register!

3rd Annual BDSRA Boo Bash
2022-10-25 18:00 - 19:00 UTC
Autumn leaves are falling which means Halloween is calling! Join us for the 3rd Annual BDSRA Boo Bash taking place on October 25th at 6 p.m. EST! Prepare for an evening filled with tricks, treats, activities, and a story! The deadline for activity boxes (limited to U.S. families only) is Tuesday, October 11th.

Click the link below to register and join the event on October 25th with the zoom link sent after registration.
Click here to register!

Holiday Grief Chat
2022-12-14 18:00 - 19:00 UTC
BDSRA Foundation will host a Holiday Grief Chat on Wednesday, December 14th at 6:00 p.m. EST. BDSRA knows the holidays can be a difficult time for grieving individuals and families. This is an opportunity for loved ones to gather, share and support one another. Register by clicking the link below and join the event with the zoom link that will be sent via email following registration.
Click here to register.

Martin Luther King Jr. Day (Office Closed)
2023-01-16
The BDSRA Foundation office will be closed on Monday, January 16th in observance of Martin Luther King Jr. Day.

BDSRA Board of Directors Quarterly Meeting
2023-01-21 09:00 - 17:00 (America/Chicago)
BDSRA’s Quarterly Board Meeting will take place Saturday, January 21st from 9 a.m. to 5 p.m. CST in Chicago. Take a look at the meeting agenda by clicking the link below.
Click here to view the Board Meeting Agenda.

BDSRA Virtual Family Valentine's Day Party
2023-02-15 18:00 - 19:00 (America/New_York)
Love is in the air! Join us for the BDSRA Virtual Family Valentine’s Day Party on Wednesday, February 15th at 6 p.m. EST.
The deadline for reserving party kits has passed, but families can still register to attend the event and purchase the book that’ll be read during the party (the link for the book is on the registration page).
Click here to register!

BDSRA Board of Directors Quarterly Meeting
2023-04-23 17:00 - 19:00 (America/New_York)
BDSRA’s Quarterly Board Meeting will take place Sunday, April 23rd from 5-7 p.m. EST via Zoom.
Take a look at the meeting agenda below.

International Batten Disease Awareness Day/Virtual 5K
2023-06-09 - 2023-06-11
Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all CLN types.
UPDATE: Donations will be accepted through Sunday, June 11th.
About this event: Join us as we celebrate families around the world and raise awareness and funds! BDSRA is hosting the 2023 International Batten Disease Awareness Day Virtual 5K on Friday, June 9th, 2023.
SIGN UP ON THE OFFICIAL REGISTRATION PAGE HERE
What exactly IS a Virtual 5K?: It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where, with whom, and even how you want to complete the 5K. This 5K can be done at any time leading up to June 9th. It can even be done in increments, keep track of your distance until you hit the 5K.
How to participate to raise funds and awareness: This event is open to individuals of all ages and abilities. Once you register, either as an individual or as part of a team, the focus then shifts to raising funds. Set a personal/team fundraising goal and encourage your family, friends, community, etc. to donate to your fundraisers. BDSRA set a $10,000 goal this year. The proceeds you raise towards that goal help BDSRA build and maintain staff who’ll provide compassionate support and advocacy for all types of Batten disease.

During International Batten Disease Awareness Day we ask participants to post pictures of themselves on their 5K route. Tag BDSRA in your posts and use the hashtag #BattenDay2023. By using #BattenDay2023 and tagging BDSRA on your social media posts, we will be able to keep up with the fun.
Ordering T-Shirts: Pictured below are this year’s T-shirts.
Front Back

UPDATE: The T-shirt order deadline has passed.
Racing Bibs: Who are you running for in this virtual 5K? Click the button below to download this year’s racing bib and write who you’re dedicating your virtual walk/run for. Share on social media, use the hashtag #BattenDay2023, and tag BDSRA to have your post shared!
Click here to download your racing bib!

Annual Family Conference | Denton, TX
2023-07-14 - 2023-07-16
Visit the Family Conference Home Page

Dog Days of Summer Party
2023-08-23 18:00 - 19:00 (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 Dog Days of Summer Party Wednesday, August 23rd at 6:00 PM EST.

The deadline to order party kits has passed. You may still register to attend the party. Click here if you wish to purchase the book that’ll be read during the party yourself.
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!
Click here to register!

Fall Grief Chat
2023-10-02 19:00 - 20:00 (America/New_York) | Zoom
Join the Batten community for BDSRA’s Fall Grief Chat on October 2 at 7 p.m. EDT. Three sessions lead by community members will be offered — one each for Bereaved SIBs (led by SIBs leader Jeni Montavon), active parents and caregivers (led by Dr. Joseph Vigil), and bereaved parents and caregivers as part of the Life Goes On program (led by bereaved parent Peggy DiCapua).
Please select a ticket for the session that best fits your needs. Please register individually. Once you register, you will receive an email confirmation and a Zoom link for the session you chose.
Click here to register.

2023 Boo Bash
2023-10-24 18:00 - 19:00 (America/New_York) | Zoom
Grab your costumes and join us for a frightfully FUN time at the 2023 Boo Bash taking place on Tuesday, October 24 at 6 PM EDT via Zoom!
The deadline to order party kits has passed. You may purchase the supplies by visiting clicking the links below.
“How to Catch a Witch” Book
Boo Bash Craft
A zoom link will be sent to the email address you use to register, along with instructions on how to join in the SPOOK-tacular fun. Families are welcome to request a kit for each child who will be participating!
Click here to register!

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.
