NEW Upcoming Events; Batten Disease Research Survey Deadline Extended

Batten Research Survey Deadline Extended

In partnership with Kennedy Krieger Institute, we encourage everyone in our Batten community to share their opinion on Batten disease research needs for all CLN types by completing an anonymous survey by Tuesday, May 28.

Learn more by reading this flyer, and complete the survey by clicking the button below.

Click Here to Complete the Survey

NEW EVENTS: First-Time Conference Attendee Orientation & SIBs Warm-Up

If you’re a Batten sibling or attending the Annual Family Conference for the first time this year, we encourage you to register for the SIBs Warm-Up and First-Time Conference Attendee Orientation. These virtual events will take place in June.

Click the buttons below for more info and to register.

SIBs Warm-Up

Orientation

CONFERENCE NEWS & IMPORTANT REMINDERS

Welcome to the 2024 Annual Family Conference, Linsey Hammon!

Back by popular demand, Hammon will again lead the grief sessions at this year’s conference. Hammon is a Certified Child Life Specialist and Grief Counselor with over 25 years of experience in healthcare.

DEADLINE REMINDER

Friday, June 14 is the deadline for the Early Bird Registration Special, conference T-shirts, registration for offsite events, and submissions for the Celebration of Life.

On June 5 at 8 p.m. EDT, Dr. Joseph Vigil will lead a virtual training for anyone who wants to facilitate discussions in the breakout groups at the Annual Family Conference in July.

The breakout groups at the conference will include bereaved fathers, bereaved mothers, grandparents, and actively caring mothers and fathers by CLN type.

If you’re arriving in St. Louis and checking in on Thursday, July 11, join us for the Welcome Session-Family Reunion and poker night! There will also be receptions for new families, grandparents & extended family members, and donors.

Watch our social media channels for more conference updates.

Visit the Conference Home Page

Batten Awareness Day T-Shirts Have Shipped!

International Batten Disease Awareness Day T-shirts were dropped off at the post office Thursday afternoon. We still have a small amount of orders left to fulfill, but be on the lookout! 👀📭

A BIG thank you to our Office Manager Linda Barkhurst and her sister, Barb, who packaged over 500 T-shirts over the past two days. We are grateful for their hard work and excited for our community to receive their shirts!

Help Us Reach Our $75,000 Fundraising Goal

It’s $5 Friday!

By donating $5 on Fridays, you help ensure that BDSRA stays connected to Batten families of all CLN types no matter where they are in their Batten journeys. That’s the power of FIVE.