As June 9 approaches, I’m reminded of just how important this day is to our community. International Batten Disease Awareness Day is OUR day! It’s the day we come together to raise our voices—to tell the world about Batten disease, share how it impacts our lives, and celebrate the fact that no one faces Batten alone.

On this day, we also invite donations to support the critical research, advocacy, and resources our community depends on. We understand your time is precious, so this year, we’ve made it easier than ever for you to take part.

Keep an eye on your inbox for a message from BDSRA that includes:

• A pre-written letter you can email, print, or hand-deliver to your neighbors, friends, family—anyone who should know about Batten.
• A JPEG graphic you can post to your social media accounts to help spread awareness.

Let’s make this Awareness Day powerful and unforgettable—together.

-Amy Fenton Parker, BDSRA President & CEO

Order your 2025 International Batten Disease Awareness Day T-shirts before MAY 11!

This year’s winning design, as voted on by the Batten community, was submitted anonymously.

DON’T FORGET: June 9 is Batten Awareness Day, and there are many ways you can make a difference for families affected by this devastating disease that has no cure. Join us in raising awareness and funds leading up to Batten Disease Awareness Day on June 9 by helping us reach our $100,000 goal.

🏃‍♀️ Register for the Batten Awareness Day Virtual 5K (June 9)

💻 Create your own fundraising page to rally your community

👕 Order T-shirts

💬 Share & raise awareness—because NO ONE battles Batten disease alone.

Funds raised will go towards the BDSRA Foundation’s greatest need(s). If you’re raising funds through a Fam Fund, you may choose where your donations are directed.

Join us in Lincoln, Nebraska, this July for a weekend filled with updates, presentations, and community!

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, and so much more.

DEADLINES:

• Early Bird Registration ends June 6
• Hotel reservations cut-off date is June 17
• Registration for Life Goes On (bereaved Batten parents) and SIBs (Batten siblings) outings: June 17

Click below to register today!

BDSRA Head of Research & Medical Affairs, Dr. Ineka Whiteman, brings you the latest news in Batten disease research and clinical studies, including CLN2 and CLN3 gene therapy updates.

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.

With numerous cuts to public agencies such as the National Institute of Health (NIH), Food and Drug Administration, as well as the termination of the Advisory Committee on Heritable Disorders in Newborns and Children, and the proposed Medicaid cuts, the rare disease community faces a lot of uncertainty.

Read below what you can do to fight back against these devastating cuts.

Share your Medicaid story

Why is Medicaid critical to you and your family? The EveryLife Foundation for Rare Diseases needs your help to show why Medicaid matters. Here’s how you can share your story:

• Share your story by sending a message to your Member of Congress through this action alert.
• Record a short (horizontal) video on your phone explaining why Medicaid is critical to you or your family. Post it on your social media channels using the hashtags #IAmMedicaid, #raredisease, and #BattenAdvocate.

Attend the next Rare Disease Congressional Caucus briefing, hosted by the Rare Disease Legislative Advocates

Newborn Screening: A Moral Imperative
May 20, 2025
12:00–1:00 PM ET
In-person and virtual options available

Click here to register.

Take action and contact your reps

Click here to visit the RDLA website to view the action alerts and contact your legislators.

Click below to read the letters BDSRA signed on to during April:

• Letter recommending at least $51.303 billion for the National Institutes of Health (NIH) for fiscal year (FY) 2026, in addition to support for the Advanced Research Projects Agency for Health
• Letter asking for $5 million in funding for the Neurology Drug Program (NDP) for FY26
• Letter supporting the restoration of $680 million in funding for the BRAIN Initiative for FY26

Let’s welcome our newest Fam Funds! We’re almost halfway to our goal of 50 Fam Funds by June 9’s International Batten Disease Awareness Day. Our 22 Fam Funds have raised over $25,000.

Tell your story, let us assist you with a community fundraiser/event, and raise Batten disease awareness. Get started today!

Ready to kickstart your spring garden and/or satisfy your sweet tooth?

Thanks to Fam Funds, you can purchase flowers and candy from the links below to raise funds for BDSRA. Click the buttons below for details, and thank you for being a Batten Advocate for a Cure!

HURRY because the last day of the Bloom Shop fundraiser is May 15. The See’s Candies fundraiser is open year-round.

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.

You are not required to sign up for or attend each scheduled chat.

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.

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 May.

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.

Abdulkadir Kayali

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.