University of Rochester Batten Center

07/03/2025

The URBC is going on the road to Lincoln, Nebraska to take clinical research to YOU!

Help Us Understand Movement in CLN2 and CLN3 Disease

Researchers at the University of Rochester Batten Center (URBC) are conducting a study to learn how walking patterns may reveal subtle changes in disease progression—using the power of Artificial Intelligence (AI)! We will use a special computer program that analyzes videos to identify and track how human body parts move.

Who can participate?
• Children and young adults with CLN2 or CLN3 disease
• Able to walk with or without assistance

What does the study involve?
• One brief 30-60 minute study visit at the BDSRA Foundation Meeting
• Video recording of walking and a neurological assessment
• Home video of walking recorded after the visit

Families will receive a $50 stipend for participating.

Study PI:Jennifer Vermilion, MD
Contact: [email protected]

SIGN UP HERE: https://calendly.com/urbc

06/09/2025

Today is International Batten Disease Awareness Day. 🧡

These devastating neurodegenerative conditions challenge every aspect of life—but it also reveals extraordinary strength, resilience, and love in those it touches.

The URBC remains committed to supporting research, care, and advocacy that bring hope and improve lives. Together, we will push forward for better treatments, better understanding, and a better future for those impacted by Batten disease.

08/12/2024

New survey for parents of children with CLN2 Batten disease!

The University of Rochester Batten Center is conducting a study on decision-making about the use of Cerliponase Alfa (Brineura) in families of individuals with CLN2 Batten disease. The URBC is interested in hearing from all affected families, whether or not your child has ever received this treatment. The study consists of a questionnaire that should take no more than 30 minutes to complete. Click the link below to learn more or email [email protected].

🔗 https://ow.ly/pmFM50SV3nX

07/14/2024

We are so honored to be selected as a Batten Disease Center of Excellence! The URBC looks forward to working with the other Centers and Affiliates to drive forward the research needed to improve the lives of affected people and their families!

BREAKING: We proudly unveil the Batten Disease Centers of Excellence & Affiliate Centers and the Batten Disease Global Research Initiative!

Read more: https://ow.ly/ph1K50SAXHU

Batten Disease Support & Research Association Australia Batten Disease Family Association

07/02/2024

THURSDAY JULY 11 STUDY VISITS AVAILABLE!

At the 2024 BDSRA Foundation meeting, researchers from the University of Rochester Batten Center (URBC) and the Foxe Lab (also at University of Rochester) will arrive early to provide opportunities for early research participation before the meeting. Early research visits will be for the URBC Natural History Study and the Foxe Lab EEG auditory perception study.

UR study teams will cover the cost of a hotel room for families for Wednesday July 10 if they schedule a research visit with the URBC and/or the Foxe lab for Thursday July 11th. The research teams will also stay at the conference hotel until the afternoon on Sunday, July 14 to accommodate families, and will see subjects on July 12 and 13 as well.

Please contact Amy Vierhile at (585) 275-4762 or [email protected] to hear more about the research projects and to make an appointment for your child to be seen.

07/01/2024

Going to the annual BDSRA Annual Family Conference?

The URBC would love to see you there! We are inviting all families to participate in research during the week of the BDSRA family conference this summer. We have several research opportunities available to individuals with all forms of Batten disease and their families.

The URBC knows that you and your family are busy, and they will do all they can to accommodate your schedules.

Please speak with them to learn more! Please contact a team member through email at [email protected]
or by phone at (585) 275-4762 to set up an appointment.

If you are interested in taking part in a URBC study but can’t do so during the week of the BDSRA conference, there
are also opportunities to do so during other times, either by video or in person at the University of Rochester Batten
Center in Rochester, NY.

03/26/2024

Thank you Amy Fenton-Parker for recapping the important work shared at our Batten Research Day! We were so honored to have you and the families present as vital participants to the discussion!

03/23/2024

So grateful and impressed by the families representing CLN3 disease, the BDSRA Foundation and the researchers from URBC and the UR-IDDRC who helped make our Rochester Batten Research Day a big success! We are all feeling even more motivated and inspired to work towards improving the lives of those affected by Batten Disease.

02/29/2024

🎗️ Today is Rare Disease Day, a day to raise awareness about the challenges faced by those living with rare diseases like Batten Disease.

Batten Disease is a devastating neurological disorder that primarily affects children, causing vision loss, seizures, and progressive decline in motor skills and cognitive function.

Research into rare diseases like Batten Disease is critical because every breakthrough brings hope to those affected and their families. The URBC is committed to furthering research in Batten Disease and advocating for affected people and their families.

Let’s unite to support rare disease research and advocate for better treatments and ultimately a cure. Together, we can make a difference! 💙

02/20/2024

NEW RESEARCH STUDY!

Characterizing Sleep in Batten DiseaseThe University of Rochester Batten Center announces a new study of sleep function inindividuals affected with CLN2 and CLN3 Batten disease. All study activities are based in thehome. Affected children are asked to provide a saliva sample to measure melatonin level, and towear a wrist-watch style activity monitor. To learn more about the study and whether yourchild might be eligible to participate, please contact us at: [email protected] or callStudy Coordinator Marianna Pereira-Freitas at: (585) 274-0205.

08/04/2022