by siteadmin | Apr 27, 2026 | Uncategorized
Beedles Braving Batten 5K Walk Date: Saturday, June 20, 2026Time: 9:00 AM (Central Time)Location:Perry Farm Park459 Kennedy DriveBourbonnais, IL 60914 About the Event: The Beedles Braving Batten 5K Walk is a family-friendly event held in recognition of International... 
by siteadmin | Jan 26, 2026 | Uncategorized
9th NCL Translational Science and Therapeutics Conference November 11-13, 2026 Marriott Boston Quincy 1000 Marriott Dr, Quincy, MA 02169 More information about registration and sponsorship coming soon. Watch the video from last year! The Our Promise to Nicholas... 
by siteadmin | Jan 26, 2026 | Uncategorized
In 2025, Our Promise to Nicholas Foundation completed the 11th year of the Nicholas Giving Tree Project. This holiday season, we sent 66 holiday care packages to children across the United States living with Batten disease. Packages were mailed in early December to... 
by siteadmin | Oct 1, 2025 | Uncategorized
2025- Join Us for the 12th Annual Nicholas Holiday Giving Tree Project We are excited to launch our 12th Nicholas Holiday Giving Tree Project, sending USPS Priority care packages to families affected by Batten disease. These children are living with a fatal... 
by siteadmin | Oct 1, 2025 | Uncategorized
The 2025 BDSRA Family Support Conference: A Grateful Recap The 2025 BDSRA Family Support Conference (July 10–14 in Lincoln, Nebraska) was an unforgettable gathering of families, friends, clinicians, industry partners, and more. Here’s a glimpse of the many beautiful...