There is something for EVERYONE to do to raise awareness and funds for Batten disease and the BDSRA Foundation for International Batten Disease Awareness Day on June 9.

• Donate to any BDSRA Fundraising team – There are many teams and individual fundraising pages. Click here to view them and make a donation to help us reach our $100,000 goal!
• SHOP –  We have secured fundraising with several outside companies who are partnering with us and giving money back for Batten Awareness Day. Click here to check them out!
• Share our Batten facts on social media – From June 1-9, we’ll post a fact about Batten disease to our social media channels (Facebook, Instagram, LinkedIn, Twitter/X). Share these posts to raise Batten disease awareness!
• Contact your congressional reps – More information will be available soon.
• Participate in the Virtual 5K – 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 choose where, with whom, and even how you want to complete the 5K. This 5K can be completed any time leading up to June 9th or after.
• Print a Virtual 5K bib – Download and print one of our racing bibs from the main Awareness Day page and write who or what you’re battling for, and post it to social media using the hashtag #BattenDay2025. Full instructions are on the main Awareness Day page.
• Utilize our Toolkit – This toolkit comes with a letter you may email or print, and a social media graphic and message to post!
• Participate in Friday Reflection – On May 30, June 6, June 13, and June 20, we will post a question on our social media channels (Facebook, Instagram, LinkedIn, Twitter/X) and invite you to offer your thoughts in the comments!

Thanks to our Fam Funds program, Batten families are hosting their own events to celebrate International Batten Disease Awareness Day! Learn more about Fam Funds and these events by clicking below.

We now have 26 Fam Funds that have collectively raised over $32,000!

The Annual Family Conference has something for EVERYONE, including research and clinical presentations, support presentations, Q&As, offsite outings for Batten siblings and bereaved parents, a FREE Dinner Dance, FREE childcare for attendees, music and pet therapy for Batten children and adults, two additional FREE events (learn more below), and so much more.

Click below to register today!

We’re excited to announce two FREE family events added to this year’s conference, thanks to the generous support of Ethan’s Reason and Sandhills Global.

Thursday, July 10:

Lincoln Children’s Museum (1420 P Street)

• 4:00–5:00 PM – Open to the public
• 5:00–6:00 PM – Private access for BDSRA families

This event takes place before the SIBs pool party and is generously sponsored by Ethan’s Reason.

Sunday, July 13 | 5:30–7:30 PM

Lincoln Children’s Zoo (1222 S. 27th Street)

Enjoy a private evening with fellow BDSRA families as we explore the zoo, ride the train, and feed the giraffes and goats. The main café will also be open. This event is proudly sponsored by Sandhills Global.

Important Note:

If you need to extend your stay at The Cornhusker Marriott, please contact Marriott Reservations at 1-888-236-2427 or the hotel directly at 402-474-7474 by June 17 to receive the group rate.

These events are free, but registration is required.

BDSRA Head of Research & Medical Affairs, Dr. Ineka Whiteman, will bring you the latest updates in Batten disease research and clinical news in the very near future.

Keep an eye on your email and our social media channels for her May column!

Study Title: Characterizing Sleep in Batten Disease
Principal Investigator: Heather Adams, PhD
Research Sponsor: BDSRA Foundation

The University of Rochester Batten Center is conducting a study of sleep function in individuals with CLN2 and CLN3 Batten disease.

What is involved?
Affected individuals will provide saliva samples to test melatonin concentration and wear an actigraph (i.e. a wrist-watch style activity monitor). Parents/caregivers will assist the affected individual with study activities and will complete questionnaires.

Who may be eligible? Affected individuals who…
• have a confirmed genetic or enzyme-based diagnosis of CLN2 or CLN3 disease
• have any symptoms of CLN2 or CLN3 disease
• are at least 2 years old
• live at home with at least one primary caregiver
• have not taken oral melatonin (supplement), or are able/willing to stop taking melatonin during study participation (approx. 9-12 days).

No travel is required! All study activities will take place at your own home.
The affected child & parent will receive $200 (total for household) for participation in the research.

If you are interested in learning more about the study, please contact the study team at BattenSleepStudy@URMC.Rochester.edu or call study coordinator Marianna Pereira-Freitas at (585) 274-0205.

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.

Barbara Wuebbels, RN, MS, is the current Vice Chair of the BDSRA Foundation’s Board of Directors.

She joined the Board back in 2013. Her background includes serving as VP of Patient Advocacy and Medical Affairs at Audentes Therapeutics and working for BioMarin. Wuebbels is also the co-founder of the PPALS organization. Watch the video above to learn more about her!

The EveryLife Foundation for Rare Diseases is excited to invite families to apply for travel stipends to attend Rare Family Day 2025 on October 11. Hosted by Ultragenyx, a biopharmaceutical company focused on developing treatments for rare diseases, this special event takes place at their beautiful campus in Novato, California, just outside San Francisco.

Whether it’s an urgent need, joy along your Batten disease journey, or sending equipment to another family in need, BDSRA is here to support you through our family grants.

The BDSRA Foundation Family Register is a vital tool that enables us to keep you informed of ongoing Batten disease research, including future clinical research and natural history opportunities.

The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time. The form takes just a few minutes to complete and can be accessed by clicking the button below.

These virtual grief chats, open to all bereaved Batten parents, 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.

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.

Hosted by Batten parent Heather Dainiak, these Coffee 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.

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. Please choose just one chat to attend in June.

Together, we remember those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.

To have your loved one’s name placed in The Illuminator and read at the Celebration of Life at the Annual Family Conference, please email patrick@bdsrafoundation.org.

Boston Drew Johnson

Are you planning a birthday fundraiser for BDSRA this year? Now is the time to start planning, and we are here to help!

Facebook is no longer paying the credit card fees for nonprofits and has turned over the program to another entity to manage. BDSRA is not currently eligible for their program, but we are working on it.

The good news is that BDSRA can make a custom link and QR code for you to create a birthday fundraiser that directly comes to us! Creating a Fam Fund is another great way to raise funds in celebration of your birthday, and we can do all the legwork for you.

If you are interested in setting up a Fam Fund for a birthday fundraiser or a stand-alone birthday fundraiser this year, please contact Beth Fries at Beth@BDSRAfoundation.org to get started.

Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten disease. We want to acknowledge the donors who gave so generously last month to our work.

Together, we are Batten Advocates for a Cure.

To view the list of recent donors, please click the button below!

From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA Foundation receives for operations, the more money BDSRA can invest in programs, research, and advocacy.

That’s the power of FIVE. 

We connect your donation to Support, Research, and Advocacy for families of all CLN types.