The recipients of the Batten Disease Global Research Initiative inaugural Research Grant round were announced on March 18, 2025. Learn more about the recipients and their research projects by clicking the button below!

NOTE: Stay tuned for Dr. Ineka Whiteman’s research column that’ll feature all the latest news in Batten disease research!

The hotel room block for this year’s Annual Family Conference is open! Reserve your room(s) today and join us in Lincoln, Nebraska in July.

U.S. and Canadian families may apply for a grant to attend the 2025 Annual Family Conference in Lincoln, Nebraska by the April 14 deadline. Priority will be given to families who haven’t received any funding in the past for the conference, are a first-time attendee, or have been unable to attend for several years due to financial stress.

Finally, conference registration will be available on Monday, April 7. Keep an eye on your email and our social media channels for updates!

The conference will take place at the Lincoln Marriott Cornhusker Hotel from July 11-13. Pre-conference activities will be held on Thursday, July 10.

We thank everyone who submitted a design for this year’s International Batten Disease Awareness Day T-Shirt Design Contest.

We are actively narrowing the submissions down to three finalists and will open public voting this week to determine the winner. Watch your email and our social media channels for more updates!

Imagine turning your journey into a powerful force for change. That’s exactly what’s happening with the BDSRA Foundation’s Fam Funds—and the impact has been incredible. In just a short time, 19 Fam Funds have already raised over $16,000 by sharing their stories through social media and email. But this is just the beginning.

Our goal? 50 active Fam Funds by June 9th—International Batten Disease Awareness Day. With the support of a dedicated Fam Funds liaison, families are not just raising awareness, they’re also hosting fundraising events that will drive real progress toward advocacy, research, and ultimately, a cure for Batten disease.

Your story has the power to inspire action. Fam Funds gives you a personalized webpage to share your Batten journey, educate your community, and rally support. Plus, BDSRA is here to help with fundraising logistics—from event planning to registration, graphic design, and more so you can focus on making an impact.

We have also seen unique fundraising efforts from the Becker and Sims families who hosted a Kendra Scott jewelry event that generated over $2,000. We are also grateful to the Palermo family and all who participated in the Panda Express fundraiser event which generated over $2,300. It’s simple efforts by our families that will help get us closer to our mission goals.

It is not too late to get involved—Fam Funds are also participating in a fun and easy Kona Ice Fundraising Event for Batten Awareness Day. Fam Funds can register to host a Kona Ice truck in their community, and BDSRA will help set up Kona Ice to come to your location (home, park, pool, etc.) on Saturday or Sunday, June 7/8, 2025, for Batten Awareness Day. BDSRA will design and send yard signs to post in the area and social media graphics. This event is great for advocacy, awareness, and fundraising.

Now is the time to take action. Your community wants to help—give them the opportunity! If you’re ready to launch a Fam Fund or participate in an upcoming event, please contact Beth at beth@bdsrafoundation.org. Together, we can make a lasting impact—one story, event, and Fam Fund at a time.

Kickstart your spring garden and/or Easter planning into full gear for a great cause!

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 for the See’s Candies fundraiser is THIS FRIDAY, APRIL 4. The Bloom Shop fundraiser is open until May 15.

BDSRA President & CEO Amy Fenton Parker, Head of Research & Medical Affairs Dr. Ineka Whiteman, and Batten grandfather Mitch Larson each traveled to Washington, D.C. for Rare Disease Week on Capitol Hill in late February, while Database Manager Noah Siedman spoke at an event in Bethesda, Maryland.

Meanwhile, the Batten community rallied behind a Panda Express fundraiser that was set up by the Palermo family.

Read the full week’s recap by clicking below!

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.

“Uplifting Experiences can take on many different forms, but the top priority is always harnessing the power of sport to inspire hope and joy in the lives of people impacted by rare diseases.

The objective of each event is to provide an opportunity for members of the local rare disease community and athletes to connect. Uplifting Experiences is centered on affording people impacted by rare diseases a unique and memorable experience, while simultaneously allowing athletes to directly connect with the people impacted by a cause they support.”

Click the button below to view the Uplifting Experiences upcoming events list to learn more and register.

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 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 have 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 April.

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.

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.

Robert A. “Bobby” Burl

Aatika Fatima

Benjamin Saucedo

Drew Wahlstrom

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.