Join us in Chicago this July for the 2026 BDSRA Annual Family Conference! The Conference brings together families from around the world affected by Batten disease, as well as researchers, clinicians, and industry professionals.

The weekend includes research presentations, activities for siblings and bereaved parents, childcare, research studies, and so much more.  

All information about this year’s Annual Family Conference can be found by clicking the links below!

The Batten Disease Global Research Initiative (BDGRI) is proud to announce the recipients of its 2026 Research Grant Round, with a total of

USD $150,000 awarded to three innovative Batten disease research projects.

Following a rigorous international review process, the selected projects were chosen for their scientific merit, translational potential, and alignment with the top Research Priorities for Batten Disease, identified within the BDGRI Research Strategy.

Click the button below to read more about the 2026 Grant Recipients and funded projects.

Tern Therapeutics has presented encouraging long-term data from its investigational gene therapy program, TTX-381, for vision loss in CLN2 disease, at the ARVO (Association for Research in Vision and Ophthalmology) Annual Meeting in Denver, Colorado.

The one-time gene therapy demonstrated durable preservation of retinal structure for up to 24 months following treatment — including preservation of the fovea, the part of the retina responsible for sharp central vision. In contrast, untreated eyes showed the progressive retinal degeneration typically seen in CLN2 disease.

Importantly:

• 18 patients have now received TTX-381
• No treatment-related serious adverse events have been observed
• Treated eyes showed stable or improved retinal structure over time
• Families and clinicians reported encouraging stability in visual behaviours and quality of life

These findings, presented by Rob Henderson, MD (Great Ormond Street Hospital, UK), suggest TTX-381 may have a disease-modifying effect on retinal degeneration in CLN2 disease and represent another important step forward in the pursuit of therapies to preserve vision for children living with Batten disease.

We are incredibly encouraged to see continued momentum in the Batten disease therapeutic pipeline and remain deeply grateful to the families, clinicians, researchers, and industry partners driving this progress forward.

2026 2nd Annual Ollie’s Purpose Golf Tournament – Monday, June 8, 2026

• This event in Lincoln, Nebraska, aims to generate funding for the BDSRA Foundation for critical research, advocacy, and support for families battling this relentless disease that has no cure. We encourage you to support by sponsoring, registering to participate, or simply helping spread awareness of Batten disease.
• Click here to learn more and register. 

Haley’s Heroes Foundation presents the 7th Annual RUN FOR THE RARE – Sunday, June 14, 2026

• Run or walk alongside a powerful movement supporting International Batten Disease Awareness Day. Can’t attend in person?  You can still take part from wherever you are. Walk or run in your own community, on your favorite trail, or even at home. Virtual participants receive an official race T-shirt and the chance to be part of something truly meaningful.
• Click here to learn more and register. 

See’s Candies Fundraiser – Deadline is Sunday, June 21

• The last See’s Candies Fundraiser raised $679.35 for BDSRA! Treat yourself and your loved ones to some assorted chocolates, lollypops, and merch like tote bags!
• Click here to purchase! 

Fam Funds: The BDSRA Foundation Fam Funds Program empowers our Batten families to share their Batten journeys, connect with fellow families, and raise funds for BDSRA. Those who sign up for the program can pick their own Fam Fund name to represent their child or family and get a personalized web page with a unique URL hosted by BDSRA for them to share their story with those in their community, and allow them to make a life-changing donation in honor of their affected child(ren). Families can direct their Fam Fund Donations to the mission areas that mean the most to them within the BDSRA Foundation: Greatest Need, Support, Research, or Advocacy.

$5 Fridays: 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.

Want to plan a birthday fundraiser for BDSRA? We are here to help!

BDSRA can create a custom link and QR code for you to use for a birthday fundraiser that directs donations to us! Creating a Fam Fund is another great way to raise funds to celebrate 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 email Heather Dainiak at heather@BDSRAfoundation.org to get started.

The following is part of a Facebook post from the EveryLife Foundation for Rare Diseases:

“The patient advocacy and disability communities are united in urging Congress to avoid further cuts to critical healthcare programs in the budget reconciliation process.

State Medicaid programs are facing difficult decisions as they begin implementing changes passed in last year’s One Big Beautiful Bill Act (H.R. 1). Some states have proposed cutting critical Home and Community-Based Services programs that our community relies on to receive care in our homes, rather than being forced into institutional settings. Lately, we’ve seen claims that HCBS programs are vulnerable to fraud and that hard-fought policy advances, such as paid family caregiving services, should be eliminated.

For the rare disease community, Medicaid’s Home and Community-Based Services programs mean greater independence, better quality of life, and care that actually reflects the needs of patients and families. Protecting program integrity is important, but it should never come at the expense of the people who rely on these services every day.

As we continue to work on both the state and federal levels to protect Medicaid funding, including HCBS programs, we urge you to share your Medicaid story and highlight the program’s impact on the rare disease community.”

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.

In this newsletter’s edition, we honor and remember:

Samuel Chappell

Tegen Crooks

Paul Jere “PJ” Snider

Davis Turner

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 heather@bdsrafoundation.org.

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!

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