LOTS of Important Dates, Batten Disease Research & Conference News

UPCOMING DATES & EVENTS

A LOT is going on in the next few weeks! Watch our social media channels and your email for updates on event registration information and conference and International Batten Disease Awareness Day announcements.

Speaking of International Batten Disease Awareness Day, we have raised over $35,000 so far! Help us reach our $75,000 goal by registering for the virtual 5K, creating a fundraising page, and sharing with your friends, family, colleagues, community, etc.

Help raise awareness by sharing who/what you’re advocating for using our race bibs! Share by tagging BDSRA on social media or emailing us photos or videos at bdsramarketing@gmail.com for us to share on our social media channels.

Click the button below for complete instructions and more information.

Visit The Main Page

Read Dr. Ineka Whiteman’s Latest Research Column

It’s time for some research updates!

Dr. Ineka Whiteman’s latest column is PACKED with info on the Centers of Excellence, research grants, clinical program updates, research presentations you can expect at the Annual Family Conference, and more! Click the button below to read.

Read Dr. Ineka Whiteman’s Full Column Here

CONFERENCE NEWS

Welcome to the 2024 Annual Family Conference, Dr. Joseph Vigil!

Vigil, a bereaved Batten father to Mary Payton, is a rehab psychologist who specializes in caring for patients with significant functional impairments/disabilities. His presentations will focus on parental and caregiver support.

On June 5 at 8 p.m. EDT, 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.

BDSRA’s Life Goes On program, dedicated to bringing together bereaved Batten parents and caregivers, will enjoy a Friday night trip to the Funny Bone Comedy Club during the Annual Family Conference! Attendees pay $30 for their dinner but enjoy the laughs for free.

Watch our social media channels for more conference updates.

Visit the Conference Home Page

It’s $5 Friday!

From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA receives for operations, the more money BDSRA can invest in programs, research, and advocacy.