As our conference attendees found out during July’s conference, WE ARE HEADED TO CHICAGO FOR THE 2026 ANNUAL FAMILY CONFERENCE!! More information will be announced when it’s available, but for now, save the dates!

Information regarding presentation/session recordings from the 2025 Annual Family Conference will be available soon. 

The Batten disease community is family!

Re-live the Pre-Conference Thursday of this year’s Annual Family Conference in Lincoln, Nebraska, by watching this video produced by Ira Graham III Photography & Films!

Hosted by Batten parent Heather Dainiak, these chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad—no pressure, no obligation—just understanding, connection, and a chance to breathe.

NOTE: You only have to complete the registration form ONCE, and you will receive the Zoom link for all future Coffee Chats. You will also receive email reminders for each upcoming Coffee Chat. 

The European Medical Writers Association featured a painting from Nora Patterson, who has CLN3 Batten disease, on the cover of its journal, Medical Writing, for its March 2025 issue. Patterson’s painting, pictured above, is titled “The Beach.” 

Click below to learn more about Nora and her artwork.

At the end of 2024, the Rare Pediatric Disease Priority Review Voucher (PRV) program expired. This critical program has enabled more than 50 therapies to reach children with rare diseases by incentivizing private-sector investment in high-risk research at no cost to taxpayers. There is still an opportunity to reauthorize the PRV Program.

September is Newborn Screening Awareness Month. Newborn screening (NBS) is widely recognized as one of the largest and most successful disease prevention programs in U.S. history. The Department of Health and Human Services required an FDA-approved treatment or cure for inclusion on the Recommended Uniform Screening Panel (RUSP); therefore, only CLN2 (Brineura) would qualify.

Although CLN2 isn’t on the RUSP, we continue to advocate for its inclusion and for NBS and RUSP alignment legislation to enable early intervention and help save lives. Watch for opportunities to get CLN2 on the NBS Panel in your state.

Visit the EveryLife Foundation for Rare Diseases website to learn more.

Click below to read the letters BDSRA signed on to in August:

• Letter requesting Congressional Leadership to act and ensure Medicare beneficiaries can access telehealth services after September 2025

Publication of Dr. Ineka Whiteman’s research columns is switching from a monthly to a quarterly schedule, effective immediately. Her next column will be published this December. 

Read her latest column by clicking below!

New Speakers have been announced for the 19th International NCL Congress in October!

• Professor Jon Cooper, Washington University in St. Louis
• Professor Sara Mole, University College London
• Professor Mark Sands, Washington University in St. Louis

Registrations are still open for this premier Batten disease conference, which unites top researchers, healthcare providers, industry partners, innovators, and patient advocacy leaders globally. Learn more and register by clicking below. 

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.

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.

This month, we honor and remember:

Isabelle “Gracie” Fawcett

Myleese Marie Henry

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.

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 Heather Dainiak at heather@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.